# Dargo's little girl needs our prayers



## working woman

Hey All, I don't know how often Brent gets on here,or if he has shared any info about his daughter.So I hope he doesnt mind me sharing this information, but I figure the more prayers the better.

His oldest daughter is very sick. Right now she is in Riley childrens hospital with a brain tumor. Her tumor is around the optic nerve and around and attatched the cartoid artery.  They are planning surgery next week. She is only 18/19 yrears old. This is the only information that I have. If I find out something else I will let you know.

So please keep Brent and his family in your thoughts


----------



## pirate_girl

YOU GOT IT!!!
and thanks Judy!


----------



## Rusty Shackleford

damn. prayers sent their way


----------



## thcri RIP

Will do Judy.


----------



## bczoom

My thoughts and prayers are with you and your family Brent.


----------



## XeVfTEUtaAqJHTqq

Continued prayers Brent.  Be strong both of you.


----------



## CityGirl

I think Dargo has mentioned his daughter was having problems with her vision.  I don't know if at the time they knew what was causing the problems.  Doc, is there a way FF can send a bouqet or gift basket?


----------



## Doc

Oh no.  Yes CG Brent did mention the vision issue but no one had figured out why she was having it.  I'm glad they finally figured out what was causing it and hopefully surgery can fix her up good as new.  So sad.  She was validitorian of her HS class and all ready to start college when this hit her.  Good thoughts and prayers coming for your daughter Brent.

Yes CG, we can surely send a gift basket or bouquet to show our good thoughts and wishes for his daughter.  Judy can you get the info we need for sending this out?
Anyone who wants to contribute a little towards this can use the paypal address and put a note that it is for Brent's daughter or I'll PM you my snail mail address upon request.
Also looking for suggestions on what gift basket or bouquet to send.  I suspect we can raise 100 or so, so please shop in that price range and make suggestions here or PM me.


----------



## muleman RIP

Wow. Not what a parent wants to experience. He had mentioned the vision problem a while back. Prayers for all and hope they can do surgery.


----------



## Cowboy

I,m sorry to here , Thoughts & Prayers sent .


----------



## loboloco

Thoughts and prayers here for Brent and his daughter.


----------



## JackieBlue

I don't know Brent yet, but I am still very sorry to hear this.  My thoughts and prayers are with him and his daughter.


----------



## BRGTold

Prayers for Brent and his entire Family..


----------



## joec

I will keep him and his daughter in my thoughts. I also have hopes that the surgery is successful.


----------



## BigAl RIP

Your'e in my prayers .


----------



## Dargo

Thanks all.  I really do appreciate the kind words and for Judy (WorkingWoman) mentioning this matter.  This has been going on for over 4 months now and no physician seemed to be concerned nor take the matter seriously and even follow up.  She was slowly getting worse and I'd just had it and made it my mission to get something moving on Monday.

A gentleman who goes by "IslandTractor" on another site happens to be a physician, and a very competent one at that, was instrumental at hopefully saving her sight and possibly her life.  I don't want to go into too many details since he is a modest man who is not seeking attention, but I cannot possibly ever thank him enough.  He and his friends in very high places really took the bull by the horns and made things happen immediately; and I do mean immediately.

Anyway, yes, she does have a brain tumor in what every surgeon calls a "very high priced real estate area" (must be a term they use among themselves because most all used those words).  Unfortunately, it is in a very difficult region to access and in an extremely sensitive and dangerous region to be poking around.  As I'm told all the best surgeons do, her team of surgeons ran every test known to see if it was possible to treat without opening her skull.

I had no idea that MRI machines come in different horsepower sizes, but they do.  All of the machines in my area only go up to 1 tesla in power.  To better see exactly what we are up against and to get precise mapping, they performed a series of MRI's done on 3 and 4 tesla MRI machines and a "Stealth MRI" for the surgery.  Due to the location of the tumor, they will have a team of surgeons working on her, such as a vascular surgeon, neurosurgeon, ophthalmologist surgeon and (can't recall the proper name) skull surgeon present.

Right now they are pushing the maximum amount of morphine they can in her and it's barely dulling the pain.  Since it will be next Thursday before they will actually do the surgery, they are letting her come home for a few days before returning next week for the surgery and a longer stay.  I'm afraid this isn't going to be a pleasant time for her and she will be in considerable pain, but that is what she wants and they have consented.

I'll update more later.  I have a lot of things to get done yet before basically spending the entire holiday season at a hospital.


----------



## tsaw

Sorry to hear this. Prayers Sent!


----------



## mak2

Hey Dargo, I work right accross the parking lot, if I can buy you a cup of coffee sometime or something I would be happy to. Otherwise, praying for you and your family.


----------



## muleman RIP

Hang in there Brent. Life throws us challenges and God gives us strength to get through them. Sounds like she is in skilled hands and your job is to keep her happy till the surgery. Best wishes for all.


----------



## Trakternut

When your girl is all done with the surgery and the news comes that she's gonna be alright, you will NEVER get a sweeter Christmas present, Dargo. You have my prayers that you get it.


----------



## baldy347

Brent, offering as much HOPE as i know how and Prayers that i can. You have a long road ahead,but don't give up . Wishing Her Well with you.
 w.


----------



## Dargo

Thank you all for the kind words.  Talk about being tough, besides having almost no sight and crushing pain in her head, Mel isn't complaining about anything this morning; even what you know she has to be feeling after being on heavy doses of morphine for a week and having a spinal migraine on top of it all from a spinal tap they did yesterday where they said they had to take considerably more than normal due to the number of tests they were going to have to run on it.  She just wants to get the surgery over and, hopefully, be pain free for the first time in over 4 months.

*edit*
Mel would be upset if I didn't mention that she is really swollen from being on extremely heavy doses of steroids for the last 4 months.  I don't think she looks bad, but her face is considerably swollen from the steroids.


----------



## muleman RIP

Brent, Healthcare decisions come with priorities. Swelling bothered me when I was hospitalized. The doc who worked on me at Cleveland clinic summed it up well. He said if we can keep you alive long enough the swelling will be taken care of. If not the mortician won't care. I was so drugged up all I could focus on was my gigantic legs. She will have plenty of time to get back to normal size. Praying for good results for her surgery.


----------



## Doc

Thanks for the update Brent.  Still thinking of your daughter and wishing her well.  Please keep us posted as you can.


----------



## pirate_girl

That lovely young lady has a lot of prayer and good wishes coming her way Brent.
This will certainly be one Christmas she, you and your entire family will never forget.
God is in His Heaven!
Soon, this will all be in the past.


----------



## fuzznutz

so sorry to hear about your daughter dargo prayers sent and hope she has a speedy recovery. it is always sad to hear of someone having to go through this situation but thankfully she is in good hands.


----------



## CityGirl

It would be nice if this young lady could have a gift basket of some sort sitting in her room when she returns from surgery. If you want to contribute, 





			
				Doc-the man with the plan said:
			
		

> Anyone who wants to contribute a little towards this can use the paypal address and put a note that it is for Brent's *daughter* or I'll PM you my snail mail address upon request.


----------



## muleman RIP

Done!


----------



## Galvatron

She is one pretty young Lady and i hope all gets sorted ASAP....In my thoughts and Prayers.


----------



## Dargo

Well, we just got our final marching orders.  She will begin the admittance process at Methodist Hospital of Indianapolis at 6am this Thursday.  Surgery should is scheduled to start at 11:00 am and last around 5 hours.

The length of surgery time has been shortened because it has become clear that they cannot remove all of the tumor.  It is just too dangerous.  They plan to remove what they can and use radiation on what is left.  I don't know if this is bad news or not.  The real fear is beginning to set in now.


----------



## loboloco

Dargo, I know you are dealing with a lot right now. I hope the best for your daughter and your family.  As you can, please keep us updated.  We do care, and will keep you in our thoughts and prayers.


----------



## RedRocker

Thanks to CityGirl for letting me know about this, I'll be praying for Mel and your Family Brent. You guys hang tough, it sounds like you've got the best team lined up to handle the task.


----------



## lilnixon

Dargo,  
Mel is a beautiful young lady.  She and your entire family are in our thoughts and prayers.  Please let us know if there is anything that we can do.


----------



## CityGirl

Praying in advance for a good nights sleep for the surgeons and all the members of the healthcare team. Dargo, Mel and family, you are in my thoughts.


----------



## BigAl RIP

What she said . My prayers are with you .


----------



## RedRocker

Yep, prayers from Texas for a successful surgery!!


----------



## Trakternut

As mine are, Dargo!


----------



## pirate_girl

CityGirl said:


> Praying in advance for a good nights sleep for the surgeons and all the members of the healthcare team. Dargo, Mel and family, you are in my thoughts.




I am so hoping that all goes well.
They have been in my prayers, sincerely.. since hearing about this.
Never fails to astound me how things like this seem to happen around Christmas for some families.
Brent, you have a hotline to Heaven here... where a collective bunch of folks are gathered, there can only be good things happening.
Love and prayers to all of you!


----------



## EastTexFrank

I don't pray much but I've re-established my acquaintance with the Lord over the last couple of days.  Hoping that everything turns out the way you want it to.


----------



## JackieBlue

Thoughts and prayers being sent for your daughter for tomorrow.


----------



## Cowboy

More thoughts & prayers for this mornings surgery .


----------



## Dargo

Well, heading out from hotel to hospital now. I already brushed my teeth with one of my kid's pimple cream.  Yum.  Now things can only get better...right?

Thanks all.  I should know more by this evening.


----------



## Big Dog

Lots of love sent from this address ........... !


----------



## Cowboy

Dargo said:


> Well, heading out from hotel to hospital now. I already brushed my teeth with one of my kid's pimple cream. Yum. Now things can only get better...right?
> 
> Thanks all. I should know more by this evening.


 Best of luck , Hang in there Dargo .


----------



## pirate_girl

Will be thinking about you all today Brent!


----------



## NorthernRedneck

Good luck today!


----------



## Doc

Good thoughts and prayers coming Mels way from here.  I can't get her off my mind and can only imagine what you all must be going through.  Best wishes Brent.


----------



## Rusty Shackleford

more sincere thoughts and prayers coming from here.


----------



## bczoom

I'm here and pulling for all of you as well.


----------



## BigAl RIP

pirate_girl said:


> *Will be thinking about you all today *Brent!


 
 Same here !Take care


----------



## Galvatron

Prayers and positive thoughts ongoing.....stay strong.


----------



## Dargo

Thanks all. Nearing 6 hours in surgery so far. No other news.


----------



## Melensdad

Dargo said:


> Thanks all. Nearing 6 hours in surgery so far. No other news.



And we are still praying for Melanie, you and your family.


----------



## thcri RIP

Prayers being sent


----------



## baldy347

Sending Prayers and much Hope.
  w.


----------



## muleman RIP

Hope it all is going well for Mel. She has youthful stamina on her side.


----------



## Dargo

A little over 6 hours and still no word. The waiting lounge is clearing out except for our little gang. Hopefully we too will have good news soon.


----------



## thcri RIP

We are all still praying for Mel.  I even have people emailing me wondering how things are going.  Hopefully soon you will hear something soon.

Geez really though you have to be almost a basket case by now.  Not sure I could handle this Brent.


----------



## CityGirl

The waiting lounge just looks like it is getting empty. We are all packed in there anxiously waiting right along with you.


----------



## Galvatron

CityGirl said:


> The waiting lounge just looks like it is getting empty. We are all packed in there anxiously waiting right along with you.



100% correct...Good thoughts and prayers ongoing.


----------



## loboloco

we.re all pullinf for her Dargo, and our best wishes are with you and your family


----------



## Dargo

Thanks all. Still waiting. Nothing to report yet.


----------



## CityGirl

Okay.  We are still waiting with you....


----------



## muleman RIP

Hang tough buddy! You must be about bouncing off the walls by now. I know i would be. Waiting with you.


----------



## tsaw

Still praying and hoping..


----------



## Melensdad

Dargo said:


> Thanks all. Still waiting. Nothing to report yet.



My experiences in the hospital waiting rooms seems to be that every surgery takes twice as long as planned.  I'm sure the waiting is maddening, heartbreaking and horrible for you and your family but we are all still here praying for your daughter, your family and you.


----------



## BRGTold

Prayers for your Daughter and entire family continue...Byron


----------



## RedRocker

Any word?


----------



## CityGirl

RedRocker said:


> Any word?


----------



## jimbo

CityGirl said:


> Okay.  We are still waiting with you....


I wonder if you realize how correct that post is.


----------



## CityGirl

jimbo said:


> I wonder if you realize how correct that post is.


I think so, Jimbo. I know many of you are like me and have been fixated on the forum site today, watching, waiting and praying. I keep trying to distract myself with news events and such but my mind is with Melanie.


----------



## muleman RIP

That and knowing this is not run of the mill surgery. Sometimes it is good that it takes a long time.


----------



## Doc

muleman said:


> That and knowing this is not run of the mill surgery. Sometimes it is good that it takes a long time.


And even if she's out of surgery the family has more important things to take care of than to post here.  We'll hear eventually.  Praying and waiting here.


----------



## Cowboy

Doc said:


> And even if she's out of surgery the family has more important things to take care of than to post here. We'll here eventually. Praying and waiting here.


 

 Ditto , I just got back in from working on my tractor but that little girl & Dargos family has been the main thing on My mind all day . good thoughts & prayers still coming .


----------



## mak2

I gotta hit the rack.  Would someone PM me when they hear something, it dings my blackberry.


----------



## jimbo

mak2 said:


> I gotta hit the rack.  Would someone PM me when they hear something, it dings my blackberry.


Done Mak


----------



## Dargo

Out of surgery and now in ICU.  Will know more tomorrow and as test results come in.  She is a very tired and hurting young lady right now.  Thank you all sincerely for your care and prayers.


----------



## JackieBlue

Still praying.  I hope you and your family are able to get some rest tonight.  Keep the faith and have good thoughts.


----------



## CityGirl

I heard a collective sigh of relief!
	

	
	
		
		

		
		
	


	




Get some sleep.  Prayers for a restful night and quick recovery. Ya done good, Melanie!!!!


----------



## tsaw

I sincerely pray that all is gonna be ok.


----------



## Melensdad

That is the most beautiful picture I've seen.  Its been a very long day for all of you, get some rest _(not that you will)_ but try.  Prayers for a good night and good news in the morning.


----------



## tsaw

CityGirl said:


> I heard a collective sigh of relief!



You said it better than I did.


----------



## RedRocker

Whew!! I'll keep my prayers rolling.


----------



## working woman

Melensdad said:


> That is the most beautiful picture I've seen. Its been a very long day for all of you


 


I have to agree with that! Continued prayers here thats for sure.
If there is anything I can do here for you on the home front please dont hesitate to ask


----------



## thcri RIP

Melensdad said:


> That is the most beautiful picture I've seen.  Its been a very long day for all of you, get some rest _(not that you will)_ but try.  Prayers for a good night and good news in the morning.




I have to agree.  Will keep praying for you all.


----------



## loboloco

Dargo, We her will continue our hopes for her and you.  We are hoping and praying the test results come back good.


----------



## EastTexFrank

Still hanging with you bud.  If all these prayers mean anything, tomorrow will bring good news.


----------



## jpr62902

Keep the goods news coming, B.  We all want to read more about her recovery.


----------



## pirate_girl

Melensdad said:


> That is the most beautiful picture I've seen.  Its been a very long day for all of you, get some rest _(not that you will)_ but try.  Prayers for a good night and good news in the morning.




What Bob said. 
Oh Brent, it's such a relief logging in here this evening and seeing her resting and knowing she made it through the surgery.
She's in excellent hands and the hands of He who blessed your life with her.
I'll be praying and thinking of the beautiful Melanie until this is all in the past and she's completely restored to her normal, healthy self.
I hope you and your family have gotten some rest and are taking care of yourselves as well.


----------



## TOMLESCOEQUIP

Brent........Life is such a gift & I foresee your daughter going on to accomplish great things. 

Best of luck & prayers for a speedy & complete recovery.

Tom


----------



## pirate_girl

Brent,
It's after 2:30 am here.
Know that all of us here, your forum family- are in the land of nod, but still have a restless hope of hearing some good news come the break of day.

Rosary in hand and talking to The Man and his Mom in about 5 minutes. 

Healing, painless dreams for Melanie.
Big love for a good medical team who are looking after her through the night.
Know she is going to recover. She will.


----------



## Melensdad

Got up tonight and find my lovely wife is sick with the flu so I figured I'd take some time to check back in on Melanie.  Seeing no new news, its back to bed, but with a prayer or two first for a speedy recovery.  Based on what you've shared it may be a long road for her but she strikes me as the type who can push onward.


----------



## Galvatron

I am so relieved for you and your family Dargo....i know this is only step one and many more challenges ahead but never the less this brings a little relief in a way.

Seeing the picture of your beautiful Girl lying there as made me choke for sure...Prayers ongoing for as long as this takes.


Thank you for the updates.


----------



## Cowboy

Galvatron said:


> I am so relieved for you and your family Dargo....i know this is only step one and many more challenges ahead but never the less this brings a little relief in a way.
> 
> Seeing the picture of your beautiful Girl lying there as made me choke for sure...Prayers ongoing for as long as this takes.
> 
> 
> Thank you for the updates.


 Ditto . I sure am releived seeing the picture of the young lady recovering . Prayers on going .


----------



## tommu56

I like every one else wish her a speedy recovery!

tom


----------



## muleman RIP

Best Christmas present is seeing her recovering after a long tough day. Be strong buddy. We are all pulling for her.


----------



## Doc

muleman said:


> Best Christmas present is seeing her recovering after a long tough day. Be strong buddy. We are all pulling for her.


Well said MM.  We all sure are pulling for Mel and your whole family Brent.  She is still at the top of all my thoughts.


----------



## Dargo

Thanks again to all.  Sorry I'm so brief in my posts.  I have no excuses except I'm a nervous wreck (but trying not to show as much, especially when in with Mel).  She obviously is hurting.  After months of just lying in bed or on the couch in the fetal position with her head covered and mostly refusing to take any pain medication (said, "why, it doesn't work"), she now wants all her pain meds asap.

In her ICU she has one nurse assigned to just her.  Parents are allowed more time with her than any others, but they don't want her to receive much stimulus since it raises her heart rate and BP.  They have some device in an artery or vein that gives them 'up to the second' BP, pulse and oxygen absorption rates.  She just discovered she is on a catheter and that made her vitals go up.  It's not easy convincing her there isn't really any other option.

Right now we are hoping our "Christmas present" will be getting Melanie out of critical care ICU into some middle stage room.  We are told going into a regular room by then isn't really a reasonable goal given what she has been through.  She doesn't want me to take any pictures to chronicle her situation since she is swollen from the surgery and feels "not so well", in her terms.  This means no pics with a flash, right?  Anyway, today is expected to be a rough day for her.  I will update as I can later today.  

Again, a heartfelt and sincere thank you to all for your kind words and prayers.


----------



## Cowboy

That sounds promising , Thankyou for the update Dargo . Seeing the pictures really brings it closer to home ( If that makes sence ) , so thanks for that . Hang in there .


----------



## Rusty Shackleford

Thanks for the update. will still be keeping you all in my thoughts


----------



## pirate_girl

Relax and focus on her healing now, Brent


----------



## Galvatron

Thanks again for the update.....try and hang in there i cant even start to imagine your pain as we all know.

I wish i could write how i feel it's just hard finding them comforting words.......Prayers and positive thoughts ongoing.


----------



## thcri RIP

Thanks for the update Brent.  Tell Melanie she has a lot of people praying for her.


----------



## CityGirl

Dargo said:


> Thanks again to all. Sorry I'm so brief in my posts. I have no excuses except I'm a nervous wreck (but trying not to show as much, especially when in with Mel). She obviously is hurting. After months of just lying in bed or on the couch in the fetal position with her head covered and mostly refusing to take any pain medication (said, "why, it doesn't work"), she now wants all her pain meds asap.
> 
> In her ICU she has one nurse assigned to just her. Parents are allowed more time with her than any others, but they don't want her to receive much stimulus since it raises her heart rate and BP. They have some device in an artery or vein that gives them 'up to the second' BP, pulse and oxygen absorption rates. She just discovered she is on a catheter and that made her vitals go up. It's not easy convincing her there isn't really any other option.
> 
> Right now we are hoping our "Christmas present" will be getting Melanie out of critical care ICU into some middle stage room. We are told going into a regular room by then isn't really a reasonable goal given what she has been through. She doesn't want me to take any pictures to chronicle her situation since she is swollen from the surgery and feels "not so well", in her terms. This means no pics with a flash, right? Anyway, today is expected to be a rough day for her. I will update as I can later today.
> 
> Again, a heartfelt and sincere thank you to all for your kind words and prayers.


 
Hey Brent, I don't know about everyone else, but the one post op picture suffices for now. I can hold out for the picture of Melanie packed up and ready to go home.  

Just an fyi and I'm sure you have learned this aleady, the blood pressure monitoring device in her artery is called an arterial line and the other great thing about it is that it allows for blood samples to be obtained without having to stick with a needle.  

I imagine she didn't get much sleep.  The nurse was probably shining a flashlight in her eyes every hour and asking questions and getting her to follow commnads to make sure all is well.  Hope she is as comfortable as can be expected.  

I'd think it would be more like Monday before she goes to a regular room....that was quite an intense surgery.  Is she in an adult ICU or a pediatric ICU?


----------



## Melensdad

Brent, I think the news of Mel being out of surgery as intense as this was and on her way to recovery is a Christmas present to all of us.  Keep her comfortable now, keep your strength up _(ditto for your wife)_, and let the healing process begin.  We'll all keep up the good wishes and prayers.


----------



## loboloco

Brent, when you can, let Melanie know she has friends praying for her everywhere.  It might give her spirits a little bit of a boost to know.


----------



## baldy347

Brent, wishing you and your Family the Best through all this. Don't give up-we are all there with you.
  w.


----------



## BigAl RIP

I can't add any more to what has been said Brent than to say we all are praying and thinking about you all . God Bless you


----------



## Doc

Melensdad said:


> Brent, I think the news of Mel being out of surgery as intense as this was and on her way to recovery is a Christmas present to all of us.  Keep her comfortable now, keep your strength up _(ditto for your wife)_, and let the healing process begin.  We'll all keep up the good wishes and prayers.



Well said Bob, I agree.  

Brent, you should see a gift basket sometime today from lots of us here on FF.  Not sure if it will even be allowed in the room since she is in ICU, but sure hope she likes it when she does get it and that some of the items come in handy.

Thanks to all who helped with this effort and extra big THANKS to CG, Working Woman and Mak2 all who were key in helping us show a little support for Mel.        Well done guys (and gals)


----------



## Dargo

Thanks so much to everyone!  Mel was just moved from ICU to a mid level room. She even got her catheter out which makes her much happier. The lovely basket arrived just when she got to her private room. It's perfect too because most all the food in it is on her approved diet. For the surgery they had to cut all her left side jaw muscles away to get deeper into the base of her brain for her surgery. They want her to gently chew and the grapes and bannas are on her list. 

Her eyes are pretty well swollen shut and her left eye looks like she went 15 rounds with Rocky. However, she isn't calling for Mick to cut her. I'm trying to upload a pic, but apparently I can't from my iPhone. 

She just ate her first food; a Reese cup from the basket from the great people at FF. I was going to get a pic of that, but as soon as she found her mouth, it was gone. Mark up a victory for all you guys at FF!  I may see if I can email a pic of her enjoying (as much as she can enjoy anything now) items from the FF basket. Thanks again!!  You guys are great!!!!


----------



## pirate_girl

GREAT NEWS!


----------



## muleman RIP

Real food does wonders for morale. Hard to believe she got the catheter out already. If they moved her down she must be strong and doing well. Great to hear and please keep us informed.


----------



## Galvatron

Thanks Dargo that's Positive signs.....Love and best wishes to your Daughter, you,your Family and Friends.


----------



## Rusty Shackleford

great news!!


----------



## XeVfTEUtaAqJHTqq

Glad things are going well Dargo - best wishes to all and a Merry Christmas too!


----------



## Doc

That is great news Brent.       I'm glad to hear Mel is out of the critical ICU room and that she can enjoy some of the stuff from the basket.    Awesome Awesome news.  Merry Christmas!!!!!!!!!!!


----------



## loboloco

Fantastic news Brent.  Hope the rest of it goes good too.


----------



## Cowboy

Thats one strong little girl there Dargo , sounds like She came by it naturally from all of the love in Your family . Great news & thanks for the update


----------



## JackieBlue

That's wonderful news!  Merry Christmas!


----------



## thcri RIP

Wow that is great Brent.  You have to be relieved now that the surgery is over.


----------



## RedRocker

Well, if she's scarfing down the goodies, she must be on the mend. You made
my day!!


----------



## working woman

Dargo said:


> Thanks so much to everyone! Mel was just moved from ICU to a mid level room. She even got her catheter out which makes her much happier. The lovely basket arrived just when she got to her private room. It's perfect too because most all the food in it is on her approved diet. For the surgery they had to cut all her left side jaw muscles away to get deeper into the base of her brain for her surgery. They want her to gently chew and the grapes and bannas are on her list.
> 
> Her eyes are pretty well swollen shut and her left eye looks like she went 15 rounds with Rocky. However, she isn't calling for Mick to cut her. I'm trying to upload a pic, but apparently I can't from my iPhone.
> 
> She just ate her first food; a Reese cup from the basket from the great people at FF. I was going to get a pic of that, but as soon as she found her mouth, it was gone. Mark up a victory for all you guys at FF! I may see if I can email a pic of her enjoying (as much as she can enjoy anything now) items from the FF basket. Thanks again!! You guys are great!!!!


 

That is awesome and great news!!   Hope she continues a with a speedy recovery. This just made my day!


----------



## BigAl RIP

Wonderful news !!! Praise the Lord !!!
You just made my day too . 

Now do me a big favor . *Get some rest !!!!* 

You all must be exhausted from the worry and the stress.


Merry Christmas , my friend !!!!


----------



## mak2

Sleep.  do it now.


----------



## Dargo

Thanks again all. They have started her on fenalyn (sp) due to post op swelling and pain. They say it is at least 100X as powerful as morphine.  Mel says it isn't helping.  I guess she is at her worst pain part.  She has 25 nice shiny staples in her head (pic would not be good even if I could post).  I think I am hitting my adrenaline dump.  May not be able to update until tomorrow. 

Thanks again to all. Seriously, her gift basket is wonderful!!


----------



## thcri RIP

You get some sleep yourself.  No sense in you getting sick over this too.  Update us when you can.  We can wait, you have given us some good news already.


----------



## muleman RIP

Merry Christmas to you and your entire family. Enjoy some rest and trust that she is getting great care for all she has been through. Life will be challenging for a while but she is strong and will pull through.


----------



## CityGirl




----------



## Trakternut

Praise GOD! Dargo!  I have been watching this thread and hoping, praying for a good outcome.

Like the rest, I am hoping that you're able to get some well needed rest for yourself.


----------



## RNE228

Your daughter and family are in my prayers.


----------



## Dargo

Apparently an infection has set in a bit and her cranial pressure is causing such pain that fentanyl (sp?), the drug 100X as potent as morphine, won't touch it.  For the first time she is really crying in severe pain.  Being late Christmas eve, no luck at getting any neurologist or surgeon to come in unless her life is at risk.  Pain or increased pressure in her eye doesn't count.  We don't know what to do.  The snow even prevents my son from bringing the rest of our family up.  Mel doesn't want to see anyone now anyway.  Hopefully everyone else has a better Christmas.  

Thanks again for the kind words from all of you.  I'll personally thank each of you later.  My exhaustion, pain and emotions are starting to get me now and I have to keep up the good face for my wife and Mel.


----------



## Rusty Shackleford

damn that is rough. sincere thoughts and prayers. hopefully after some rest, she will be feeling a bit better


----------



## loboloco

Brent, we will be thinking of you and Mel.  I hpe they can get her some relief soon.  Pressure now doesn't sound super good.


----------



## Cowboy

I,m sorry to here about the setback Dargo , thoughts & prayers still going to Your family . I trully hope things are better in the morning .


----------



## joec

Damn Dargo that is tough, and I'm really sorry to hear it. My advise it to keep up your strength for those around you, it really does pay off when all is said and done.


----------



## pirate_girl

Just hang in there Brent and be with her.
I hate to think of her being in such pain that a drug such as that won't even touch.


----------



## working woman

Brent sent this to my phone and gave me permission to post it here.
His message said that the picture  was taken this morning(12/24)

poor baby, Its heart wrenching just to see this


----------



## pirate_girl

It is heart wrenching Judy.
But she made it through the surgery.
She is in a lot of pain that even the God of Narcs apparently isn't touching for the breakthrough pain.
It's encouraging to see that she is sitting up in that pic and has been able to eat something today.
I just wish the pain would be taken away for her right now!


----------



## pirate_girl

I have one Catholic hymn that comes to mind for Melanie.

On Eagle's Wings

[ame="http://www.youtube.com/watch?v=4rRea9qnjK4"]YouTube        - On Eagle's Wings MV[/ame]




*Get Well Soon Melanie*


​


----------



## Galvatron

Merry Christmas Dargo Family....I pray this day brings Mel some pain relief.

Will be popping in for any updates.

Keep the Faith.


----------



## muleman RIP

Hope they find something to help her with the pain. Her current med is a long term good pain med and should work better as it gets into her system. My wife has to take that on a schedule basis and it works if you keep on a strict schedule. She looks good for what she has been through and as the docs like to tell you if you are hurting you are still alive. Today is another step closer to recovery. Hang in there.


----------



## thcri RIP

She is one tough little girl.  To be in surgery that long yesterday and to even be sitting up today is amazing. Prayers still coming Brent.


----------



## baldy347

Hang on ,don't let go .we're all pulling for Mel as well as for you and your Wife and family. 
  w.


----------



## Dargo

I had to come back to the hotel early this morning for a bit.  One of my other daughters, Madison, has been here with us the entire time and has been a wonderful bedside nurse.  Poor little Maddie was a walking zombie.  I want to go back over to the hospital (my wife stayed all night), but little Maddie is sound asleep and I don't want to wake her.  I'm sure it's not the Christmas morning she wanted.

Maybe (fingers crossed) Mel and mom are resting since I get no reply to text messages.  I don't want to call and wake them if they are sleeping.

Merry Christmas to all!  I went down to the vending machine for a Christmas breakfast and bought a "bear claw".  Half way through I just thought it tasted bad and threw it away.  As I was doing so I saw why; it had mold all up the back side.  Betcha never had a Christmas breakfast like that!


----------



## Cowboy

Thanks for the update . Hopefully they are getting some much needed rest . You really need to get some Yourself  . Best of luck for the rest of the day & thoughts & prayers that You all get through this christmas to enjoy the many years to come .


----------



## RedRocker

Brent, this will be one of those Christmases you'll look back on someday and have
some stories to tell. Hopefully when your daughter comes home and is on the mend, you
guys can celebrate Christmas for real with home cooking. Nobody know exactly when Jesus was born anyway, you could be celebrating closer to the real day anyway.
 Continued thoughts and prayers, Mike


----------



## BigAl RIP

I only want one thing for Christmas ...... To hear that Mel got up , went home and lived happy ever after . Our thoughts are with you .


----------



## RedRocker

BigAl said:


> I only want one thing for Christmas ...... To hear that Mel got up , went home and lived happy ever after . Our thoughts are with you .



What Al said.


----------



## working woman

Brent sent an updated picture to my phone this morning.Don't think he will mind if I post it. He said it was between dressings.


----------



## working woman

Good to she her sitting up and in regular clothes!,hope that is a sign she feels better. I also see remnant's of our basket in the background.  May she continue to improve


----------



## Galvatron

Thanks for the Picture update WM....sitting up looks promising.

So pretty...i do pray some of that pain as gone....hang in there Mel your courage is remarkable


----------



## Dargo

Her section of skull that was removed is not fixed in place yet or this massive swelling could cause brain damage. Still, I cannot imagine how of must feel to have so much swelling that your skull plate has moved as shown in CT scan at 4 this am. 

Yes indeed, when able, she is working her way into the basket. She was looking through magazines until pain got too bad. Her surgeon cannot be reached and nobody else can be reached to get her that really powerful pain reliever. I'm about ready to hit the streets. Heck, I've already eaten at Churches chicken at 2:30 am. The ladies behind the bullet resistant glass even insisted giving me the food free when they asked what I was doing on MLK Blvd at that hour. Truly kind women. Even offered to have their cook escort me to my car. I assured them that I'd be okay with a wink.  They said I wasn't as dumb as I looked. LOL!

Trying to just get Mel put under for a while so her emotions may ease with a break from the pain. Still no word; it's Christmas day.


----------



## Dargo

BTW, I want to sincerely thank all of you again while I'm still awake. You guys are great and the very generous basket is appreciated more than I can express!


----------



## Dargo

I obviously only have limited Internet via phone. Isn't there some pro football game on today?  Of all my kids, Mel is my football buddy.


----------



## loboloco

Brent, we all wish we could do more.  If there were some way to take her pain and pass it around so she would hurt less a lot of us would be arguing about being first in line.  Special young lady and I hope she gets through this and has no more major problems.


----------



## thcri RIP

Dargo said:


> I obviously only have limited Internet via phone. Isn't there some pro football game on today?  Of all my kids, Mel is my football buddy.




Dallas and Cardinals at 7:30 pm ET on the NFL network.  Other than that I don't see any until Sunday.


----------



## RedRocker

You'd kinda think the Doc's would be available to check on her Christmas or not.
Seems like a pretty serious operation to do right before Christmas then disappear
for the weekend.


----------



## jimbo

I think Brent said that they could be reached if the situation was life threatening.  That is the good news.


----------



## Trakternut

loboloco said:


> Brent, we all wish we could do more.  If there were some way to take her pain and pass it around so she would hurt less a lot of us would be arguing about being first in line.



There'd be no argument!  I'd make sure I was first.
Hang in there, Dargo.  Still talking with The Almighty about your girl.  Methinks that by now, she's become *our* girl. Hope you don't mind sharing!


----------



## XeVfTEUtaAqJHTqq

Be strong Brent.  I'm praying for Mel and your family.  Let's hope this time will pass quickly and the healing will soon be forgotten.


----------



## Dargo

Dang.  I feel so helpless.  Besides no relief from the pain (unbelievably, they have just dropped her down to stuff like Vicoden), her swelling is really becoming an issue.  I can't post any more pics with her swelling worse.  It's starting to rip at the staples in her head and there is no way they can even check her left eye right now.  The pressure from the swelling has to be unreal.  Her skin is getting shiny from being stretched.  One nurse is getting so upset that she is willing to risk her job to drive to a surgeon's house and bring him to her room.  She is a very kind black lady.  I don't want her to lose her job, so I asked for directions and I'd go beg.  She said that I may get arrested if I did.  I don't know what to do.


----------



## mak2

I cant believe you are having that kind of trouble there.  If her head is swelling and pulling out the staples and they are cutting her back to vicodin something is crazy wrong.  At my hospital I would advise you to contact the hospital supervisor, the chief resident and dont stop demanding to seen their boss.  Just dont lose your temper and dont give up.


----------



## mak2

Call me if you want, I gave you my number.  If you get no help soon my wife offered to come up and help you.  I have had a few beers but she hasnt, I will keep my mouth shut but she wont.


----------



## Melensdad

mak2 said:


> . . . *contact the hospital supervisor, the chief resident and dont stop demanding to seen their boss.  Just dont lose your temper and dont give up.*



I have to agree, you need to bump this up the ladder and get someone to see Mel.


----------



## tsaw

We are all with ya. I'm asking and praying this will turn out OK.


----------



## pirate_girl

I was thrilled to pieces to see the latest pic of Melanie sitting up from earlier today.
However, I have to agree with Mak's post below.
I do hope something has been done by now.
This is unreal.
Best wishes from here, and the prayers will not stop until we know that little girl is out of pain and the situation has been_ properly addressed_.. as it SHOULD have been by now.




mak2 said:


> I cant believe you are having that kind of trouble there.  If her head is swelling and pulling out the staples and they are cutting her back to vicodin something is crazy wrong.  At my hospital I would advise you to contact the hospital supervisor, the chief resident and dont stop demanding to seen their boss.  Just dont lose your temper and dont give up.


----------



## JackieBlue

That is just horrible.  Yes, like everyone said, demand that someone see her.  Unbelievable.  I feel awful for her.  I will continue with my thoughts and prayers.


----------



## jpr62902

She's made it this far, Brent.  Don't worry, she'll get there.  We're all pulling for you and your daughter.


----------



## pirate_girl

Looking back on this and thinking a little, perhaps the call to drop her back from Fentanyl to Vicodin was based on her stats and her activity levels.
I do agree that her doctor(s) should have been available, holiday or not.
Her nurse/those on duty at the hour probably would have been the ones in charge to make that call, and that sucks when situations arise like this.


----------



## Cowboy

I hope everyone has gotten some much needed rest & Mel,s pain has been releived and other concerns have been addressed , continued thoughts & prayers . 

   Not being able to find the doc or surgeon is BS , I,m afraid I would have handled it a lot differently which problly wouldn,t have worked out so good . So kudo,s to you Dargo for showing restraint at such a tough time .


----------



## muleman RIP

There is a fine line between pissing off the staff and getting quality care when hospitalized. I am fortunate to have a nurse for a wife and she handles that aspect of things much better than I do!There are times when it is necessary to get the patient advocate involved and holidays make it that much worse. There are also a patient bill of rights that all hospitals must adhere to. Tough call at times.


----------



## mak2

Has anyone heard from Dargo?  I mean PM wise or anything?


----------



## Cowboy

mak2 said:


> Has anyone heard from Dargo? I mean PM wise or anything?


 Nope , but I,m hoping he,s just finally getting some rest though & that they both got to enjoy the football game together .


----------



## mak2

yep, hope so too.


----------



## pirate_girl

mak2 said:


> Has anyone heard from Dargo?  I mean PM wise or anything?


No.


----------



## Melensdad

Brent was online early this morning but didn't post anything.


----------



## bczoom

Hey Brent,

Been offline for a couple days but glad to hear the surgery was a success but I'm truly sorry to hear that things aren't going as well as hoped post-op.

Not sure if you've had any success yet but if you need to talk to someone at the hospital, ask for the Administrator on Duty.  There's one available at all times and they have to come if requested.  They are senior level people and can make things happen.

Prayers and best wishes still heading your way!

Brian


----------



## working woman

mak2 said:


> Has anyone heard from Dargo? I mean PM wise or anything?


 

I had sent him a text last night asking how Mel was and he responded that she was far worse. On top of that he said he was sick (think from the stress of it all) When I sent him text this morning he did not respond. 
I know he has a history of migranes so he could very well have one of those (at least lets hope so and not something worse with Mel)

All I can say is keep praying people


----------



## Trakternut

Thanks for the update, Working Woman.  Keep us in the loop as much as you can.
You betcha there'll be prayers ascending from North Dakota!


----------



## Galvatron

Thanks Working Woman.....Praying hard for Mel and all the family.


----------



## working woman

just texted Brent asking for any kind of update that I could pass on since
 everyone was asking about news. 
He just sent back that it was a really bad night last night and a bad day today


----------



## muleman RIP

Thanks so much for the update.


----------



## thcri RIP

That poor girl.  I feel so bad for her and pray tonight and tomorrow will be better.


----------



## mak2

thcri said:


> That poor girl.  I feel so bad for her and pray tonight and tomorrow will be better.



yea.  me too.


----------



## BigAl RIP

thcri said:


> That poor girl. I feel so bad for her and pray tonight and tomorrow will be better.


 
Words cannot express how bad we all feel for Mel, Brent and the family . Prayer is our one great strength . Let us all pray together for this family .


----------



## Dargo

Thanks again to all the great people here who have expressed their unsolicited compassion and prayers.  I hope we don't have anymore nights like last night and most of today.  Rather than being downgraded and talking about a release date, we only had a parade of physicians and surgeons coming in and ordering more tests.  Of course, you know all of the examinations and tests hurt her and distressed her more.

We have changed medications, well, the physicians have changed several medications and (fingers crossed), I think we are starting to turn the ship from rougher seas more towards calmer waters.  Pics now would not be appropriate.  I'm sure all will understand.  Hopefully tomorrow will mark the official turning point.  Biopsies ought to be in tomorrow or the next too.

Thanks again.  Sorry, but I'm whipped.


----------



## jimbo

Thanks for checking in.  I'm glad that you are reaching a turnaround point.  Wishing you the best.


----------



## jpr62902

Keep the good news coming, Brent.


----------



## working woman

well good, glad to hear the dr.s finally did something and things are finally turning for the better. Hopefully all of you can get some much needed sleep now.   
Thanks for the update Brent


----------



## pirate_girl

working woman said:


> well good, glad to hear the dr.s finally did something and things are finally turning for the better. Hopefully all of you can get some much needed sleep now.
> Thanks for the update Brent



What Judy said. 
Thanks Judy and you too Brent for taking the time to keep us up to date.


----------



## Cowboy

Not much to say other then I,m hoping things get much better really soon for your daughter & get some rest yourself . I cant even imagine what your special child , you & your family have been going through , but the best thoughts & prayers to you all .


----------



## Galvatron

Thanks for taking the time for the update....i am so sorry Mel has had to endure such a bad night and day she for sure as been through enough without that.

Praying last night went smoother and these new meds are the starting point for the healing process,my son is the the same age bracket as Mel and sends his Love and best wishes...he says he is looking out for her with strong positive thoughts due to the fact his generation sticks together.

Try and stay calm Mel needs you strong....Best wishes.


----------



## NorthernRedneck

Thanks for the update.  Been following this thread closely and sending as many prayers as I can your way.


----------



## Melensdad

Brent, I think I speak for all of us, but this is the first thread I view in the morning, the last I view at night and the one I visit 10+ times a day looking for updates.  Don't worry about posting pictures, there is no need to take them if they upset her.  But when this is over a photo of her smiling might be nice, until then I think we can all hold off on seeing her.  Please take care of yourself, take naps and make sure your wife also gets some sleep.  Stay strong for Mel and know that we are all here thinking and praying for your family.  Lets all hope the changes in the medications relieve the swelling and reduce her pain.


----------



## JackieBlue

Still praying.


----------



## RedRocker

Melensdad said:


> Brent, I think I speak for all of us, but this is the first thread I view in the morning, the last I view at night and the one I visit 10+ times a day looking for updates.  Don't worry about posting pictures, there is no need to take them if they upset her.  But when this is over a photo of her smiling might be nice, until then I think we can all hold off on seeing her.  Please take care of yourself, take naps and make sure your wife also gets some sleep.  Stay strong for Mel and know that we are all here thinking and praying for your family.  Lets all hope the changes in the medications relieve the swelling and reduce her pain.


----------



## Av8r3400

Ditto, here too...  All of our best to your little girl and the rest of your family, too, Brent.



Peace and Rest to you.


----------



## thcri RIP

Melensdad said:


> Brent, I think I speak for all of us, but this is the first thread I view in the morning, the last I view at night and the one I visit 10+ times a day looking for updates.  Don't worry about posting pictures, there is no need to take them if they upset her.  But when this is over a photo of her smiling might be nice, until then I think we can all hold off on seeing her.  Please take care of yourself, take naps and make sure your wife also gets some sleep.  Stay strong for Mel and know that we are all here thinking and praying for your family.  Lets all hope the changes in the medications relieve the swelling and reduce her pain.



Could not have said it better.  It is the first and the last and the one in all of the betweens I look for.  Brent we are here praying, you just take care of your family.  Don't be worrying about us.


----------



## Tractors4u

Brent I have not logged on much lately and just read this entire thread. My heart goes out to Melanie and your entire family.  I'm praying!


----------



## loboloco

Melensdad's post 100%.  Give Mel our love.  And don't wear yourself down so bad you can't function.  It;s real easy to do.


----------



## EastTexFrank

What Cowboy and Bob said.


----------



## Dargo

Thanks again all.  Apparently I kept falling asleep in my chair and snoring so I've been banished to the hotel for a few hours.  Unfortunately, my little Melanie isn't feeling any better and is still in considerable pain.  I think I finally finished my rightk knee off but am having trouble getting any surgery before Jan 1st.  After that, I get to pay for the entire surgery again due to my high medical deductible.  Anyone have any pull with an orthopaedic surgeon here in the Indy area?

Oh well, Melanie is far, far more important.  That huge deductible is just going to get me I suppose.  I wish I had better news to report.  Her surgeon won't be seeing her again until tomorrow morning.


----------



## muleman RIP

Get some sleep buddy! You can have the next shift after some sleep.


----------



## Galvatron

Sleep if you can it will help but switching off i understand will not be easy...thanks for the update Prayers and positive thoughts ongoing.


----------



## pirate_girl

Still praying for you all Brent.


----------



## loboloco

Prayers and thoughts with ya'll Brent.  Get a little sleep, then spell the wife so she can get some.


----------



## Melensdad

Dargo said:


> Thanks again all.  Apparently I kept falling asleep in my chair and snoring so I've been banished to the hotel for a few hours.


OK now stay off the computer, draw the drapes, turn off the TV and get some sleep.  You obviously need it.





Dargo said:


> Unfortunately, my little Melanie isn't feeling any better and is still in considerable pain.
> . . .
> I wish I had better news to report.  Her surgeon won't be seeing her again until tomorrow morning.


If they changed her meds it may take a day for them to show signs of working.  Lets give them some time and hopefully when you wake up from your nap and get back to the hospital maybe there will be some glimmer of improvement and hopefully a start to the reduction in her pain.


----------



## Dargo

Melensdad said:


> OK now stay off the computer, draw the drapes, turn off the TV and get some sleep.  You obviously need it.



Okay, I was going to argue a bit (hey, it's in my DNA), but I think you're right.  I kept tossing and turning so I thought I'd go back to the hospital.  My overload of coffee had my mouth tasting nasty so I brushed my teeth and started to leave.  Damn if I didn't have the nastiest taste in my mouth.  I went back to check out what brand toothpaste was so I wouldn't buy it again, and discovered that I just brushed my teeth with my youngest daughter's zit cream!   That stuff tastes like crap!!

In all the stress, I thought I'd tell that small bit of humor.  I don't want to take anything to make me sleep since Mel wants to watch football with me tonight, but I do think I'm going to lay down again...


----------



## muleman RIP

Well tonight's game will be easier to watch than the Giants/Packers was yesterday. Tell her she has a lot of folks pulling for her.


----------



## pirate_girl

Dargo said:


> Okay, I was going to argue a bit (hey, it's in my DNA), but I think you're right.  I kept tossing and turning so I thought I'd go back to the hospital.  My overload of coffee had my mouth tasting nasty so I brushed my teeth and started to leave.  Damn if I didn't have the nastiest taste in my mouth.  I went back to check out what brand toothpaste was so I wouldn't buy it again, and discovered that I just brushed my teeth with my youngest daughter's zit cream!   That stuff tastes like crap!!
> 
> In all the stress, I thought I'd tell that small bit of humor.  I don't want to take anything to make me sleep since Mel wants to watch football with me tonight, but I do think I'm going to lay down again...



Have some good rest and beware of strange tasting toothpastes.
I've been where you are Brent. Maybe all of us here have at one time.
You cannot function when someone you love with all your might isn't well.
Hang tough.. and kiss Melanie on the cheek for all of us.


----------



## ki0ho

Been watching this thread from the begining....I find myself wishing that I had been talking to the father a lot more in the past.....maby he would be more apt to hear my request now.....[no smile fits]     Jerry


----------



## ki0ho

pirate_girl said:


> Have some good rest and beware of strange tasting toothpastes.
> I've been where you are Brent. Maybe all of us here have at one time.
> You cannot function when someone you love with all your might isn't well.
> Hang tough.. and kiss Melanie on the cheek for all of us.





I did that once with brillcream hair cream in a tube...ONLY ONCE!


----------



## pirate_girl

ki0ho said:


> I did that once with brillcream hair cream in a tube...ONLY ONCE!


Hopefully, it was just "a little dab" 

Here's hoping Brent is getting some much needed rest, and that Melanie is as comfortable as can be expected at this hour.


----------



## norscaner

Dargo said:


> Okay, I was going to argue a bit (hey, it's in my DNA), but I think you're right. I kept tossing and turning so I thought I'd go back to the hospital. My overload of coffee had my mouth tasting nasty so I brushed my teeth and started to leave. Damn if I didn't have the nastiest taste in my mouth. I went back to check out what brand toothpaste was so I wouldn't buy it again, and discovered that I just brushed my teeth with my youngest daughter's zit cream!  That stuff tastes like crap!!
> 
> In all the stress, I thought I'd tell that small bit of humor. I don't want to take anything to make me sleep since Mel wants to watch football with me tonight, but I do think I'm going to lay down again...


 





 Sure glad it wasn't prep H


----------



## RedRocker

No updates today?


----------



## Galvatron

RedRocker said:


> No updates today?



No m8 there as not been.....Praying hard and will keep checking in for with the hope of positive news.


----------



## muleman RIP

As much as folks here care about his whole family I am sure they are his priority right now. Prayers for all continue.


----------



## rback33

I caught this thread briefly the day it started and have not been back to the forum since. My thoughts and prayers are with you and your family Brent. It's remarkable what can happen when you finally get help from the right people. She has a long row to hoe still but I am sure she will be well taken care of from now on. You won't settle for anything less. Get some rest. We are all right there with you.


----------



## Dargo

Just a quick update; not a good day. Issues with BP, swelling and extreme pain are causing concern. Needless to say, it's hard to try to keep her attitude up after almost 5 months of pain and no vision and now almost a full week of the most extreme pain you can imagine. I'm beginning to get upset with the inability of the physicians to manage pain. It's like they think she's lying and they won't give her what she needs. 

It should be a hint when she has ALWAYS had low BP and now they can't get her BP below 180/115. That is a direct reflection of her pain. I'm gong on a mission to get some attention one way or another. I can't watch her just lay there and suffer when I know they have better pain mgt available.


----------



## BRGTold

ReNewed prayers for Dargo and Mel and the Entire Family.....


----------



## Doc

Brent, every action has a reaction of some type.  Perhaps the stronger pain meds would inhibit her healing or something like that.  It's a delicate balancing act.  I hate to hear she's in such pain, but I think you have to trust the doctors (assuming more than one doctor is involved).  
Best wishes for Mel and more prayers on the way.  Hang in there buddy!!!!!


----------



## RedRocker

Thanks for the update, wish there was more I could do.


----------



## EastTexFrank

I feel so useless.  I read this and tears come to my eyes.  Sometimes prayers don't seem to be enough.


----------



## loboloco

Brent, we are still with you, praying and hoping.  Wish we could do more.


----------



## Cowboy

EastTexFrank said:


> I feel so useless. I read this and tears come to my eyes. Sometimes prayers don't seem to be enough.


Ditto , I'm at a loss for words but more thoughts & prayers sent your way for Mel & the entire familly , just stay strong as you have been Dargo and dont let yourselves run down .


----------



## pirate_girl

Dargo said:


> Just a quick update; not a good day. Issues with BP, swelling and extreme pain are causing concern. Needless to say, it's hard to try to keep her attitude up after almost 5 months of pain and no vision and now almost a full week of the most extreme pain you can imagine. I'm beginning to get upset with the inability of the physicians to manage pain. It's like they think she's lying and they won't give her what she needs.
> 
> It should be a hint when she has ALWAYS had low BP and now they can't get her BP below 180/115. That is a direct reflection of her pain. I'm gong on a mission to get some attention one way or another. I can't watch her just lay there and suffer when I know they have better pain mgt available.



An elevated bp and edema would be one of the (possible) side effects for the type of surgery Melanie had.

I would have thought that would have been addressed by now Brent.
If you think her team of surgeons and nurses at the hospital are yanking you all around, you need to speak with somebody.

By the way.. where is Citygirl?
She'd know a hell of a lot more than I would about advising you more in-depth on the situation.
It's frustrating just to log in here only to find nothing much is being done.


----------



## baldy347

Hang in there Brent, Mel needs you now more than ever before, i feel frustrated to sit here and can do nothing but Hope ,but Hope i very much do.
 w.


----------



## Dargo

I just got back to the hotel room, and we are just going to have to do something different.  Mel is in far worse pain than when we brought her here, they constantly miss her dosing for pain medication on 3rd shift and nobody in hospital administration is here until next week so there is nobody to complain to that will make any difference.  She not only has the same pain from the tumor as before, but the added pain of brain surgery to go along with it and nobody seems to care.  They keep telling us that a couple of hours either way on administering her pain meds makes no difference.  First, I think that's BS and second, what they are doing is not working.

That leaves me no choice but to leave and see if I can get a hospital in our home town to admit her to manage her pain.  I can't sit up here indefinitely with her in the hospital and me spending $200 or more a day for hotel and meals.  Yes, it's only been a week, but she has been suffering greatly in this last week and they are talking about "a few more weeks" here now.  At first they said that they doubted we'd get home for Christmas, but we wouldn't miss it by much.  Now their solution simply is unacceptabe and, being right in the middle of the holidays, there isn't anyone at the hospital I can contact to voice my concerns.  I'm told the surgeons only want to be contacted if it's "life or death" matters.

Yes, I'm tired, my right knee is wrecked and needs surgery badly now and I have 3 young kids at home leaving me in a panic each day to make sure they are taken care of as well as our pets.  I'm not hitting the panic button, but I am hitting the "no more" button as far as status quo for doing nothing but watching my daughter lay in pain and every person who can make decisions being on vacation.  The lounges at Methodist are full of people expressing the same concern; they can't just stay in a hotel or live in the lounge for another week.  I'm checking out now to try to find a hospital in my home town that can administer pain meds.


----------



## Cowboy

I,m really sorry to here Dargo , Best of luck on finding someone who can find a releif for her pain , closer to home I would think be much better anyway . Just not much else to say other then you ALL have my thoughts & prayers .


----------



## pirate_girl

Good luck Brent.
I've gotta say, this whole situation at that hospital is becoming unbelievably ridiculous.


----------



## JackieBlue

I feel so terrible for her and you.  You are doing the right thing by checking into other avenues.  I'm not a doctor or a nurse, but I was under the impression that the pain meds should be given on time all the time so that it's regulated and the pain doesn't have a chance to return in full force.

Continued thoughts and prayers.


----------



## pirate_girl

Riley is supposed to be the cream of the crop among children's hospitals in this country.
That's what bothers me.


----------



## Doc

Any hospital should be able to administer pain meds on time.  I do not know of any business who lets all the higher ups go on vacation the same week.  Someone has to be in charge, and they should be able to do something.  I would be up in arms also.  Ridiculous.  Why do a surgery on 12/23 when you know you are letting all your higher ups off the next week and the doctors only 'want' called in life and death situations.  What a crock.


----------



## rback33

My guess is that if you tell them you are prepared to make a formal complaint to your state board of healing arts or whatever it's called there, that administration will suddenly show up. They have to be licensed by someone and when you tell them you are going to complain to that group you are bound to get a reaction. Hell, I will even look up the number for you so that you can show you are not bluffing. Good luck my friend. We are all pulling for guys.


----------



## BigAl RIP

Doc said:


> Any hospital should be able to administer pain meds on time. I do not know of any business who lets all the higher ups go on vacation the same week. Someone has to be in charge, and they should be able to do something. I would be up in arms also. Ridiculous. Why do a surgery on 12/23 when you know you are letting all your higher ups off the next week and the doctors only 'want' called in life and death situations. What a crock.


 
 Agreed 100% .. Go get em !!!


----------



## Galvatron

I wish i could give advice on what to do Brent but i am not in the know how on your medical system.....just try and deal with things in as calm manner you can but understandingly your patients are close to the end.

I can offer my continued Prayers and positive thoughts.


----------



## XeVfTEUtaAqJHTqq

Doc said:


> Any hospital should be able to administer pain meds on time.  I do not know of any business who lets all the higher ups go on vacation the same week.  Someone has to be in charge, and they should be able to do something.  I would be up in arms also.  Ridiculous.  Why do a surgery on 12/23 when you know you are letting all your higher ups off the next week and the doctors only 'want' called in life and death situations.  What a crock.



I agree.  That doesn't sound right.  Around here someone is on call and doing rounds 365 days a year.  All I could think is that this surgery is so specialized that the regular staff Doctors don't want to be interfere with the Surgeons cases.  If that is the case then the Surgeons need to be available.  I think there is a standard of care missing or some serious communication issues.


----------



## tommu56

Dargo said:


> I just got back to the hotel room, and we are just going to have to do something different.  Mel is in far worse pain than when we brought her here, they constantly miss her dosing for pain medication on 3rd shift and nobody in hospital administration is here until next week so there is nobody to complain to that will make any difference.  She not only has the same pain from the tumor as before, but the added pain of brain surgery to go along with it and nobody seems to care.  They keep telling us that a couple of hours either way on administering her pain meds makes no difference.  First, I think that's BS and second, what they are doing is not working.
> 
> That leaves me no choice but to leave and see if I can get a hospital in our home town to admit her to manage her pain.  I can't sit up here indefinitely with her in the hospital and me spending $200 or more a day for hotel and meals.  Yes, it's only been a week, but she has been suffering greatly in this last week and they are talking about "a few more weeks" here now.  At first they said that they doubted we'd get home for Christmas, but we wouldn't miss it by much.  Now their solution simply is unacceptabe and, being right in the middle of the holidays, there isn't anyone at the hospital I can contact to voice my concerns.  I'm told the surgeons only want to be contacted if it's "life or death" matters.
> 
> Yes, I'm tired, my right knee is wrecked and needs surgery badly now and I have 3 young kids at home leaving me in a panic each day to make sure they are taken care of as well as our pets.  I'm not hitting the panic button, but I am hitting the "no more" button as far as status quo for doing nothing but watching my daughter lay in pain and every person who can make decisions being on vacation.  The lounges at Methodist are full of people expressing the same concern; they can't just stay in a hotel or live in the lounge for another week.  I'm checking out now to try to find a hospital in my home town that can administer pain meds.




I think a call to the president or administrator in order find out were their office is and go camp out there 
Make some noise in the lobby if you have to! 

What about the head of nursing there has to be a boss there.
Have a sit down with the Dr that did the surgery if he cant get results sick a lawyer on him too.

Some one is on call tell them they have 2 hours to get they or they will be hearing from your lawyer in 2 hours and one minuet and stick to your gun 

cal the local news 

tom


----------



## working woman

Brent, if you bring her home here you might run into the same situation here with the drs being on vacation. Just something to think about. 
Also, have you contacted your friend dr from the other forum and talked to him. Maybe he can help you rectify some of this?


----------



## tommu56

I think you said she was in Riley 

here are some numbers to try 

Nursing Administration RI 1960 317-944-2201 Marilyn Cox

Patient Advocate RI 1960 317-944-6637 317-312-8204 Robin King

*Daniel L. Fink named Riley Hospital for Children president and CEO*


tom


----------



## rc2james

Brent, I have been watching this struggle from afar and I can say that my heart and prays go out to you and your family every hour of every day. I have no medical background but using past experiences from dealing with family members, I would suggest that you ask for a heart to heart with the doctors whenever possible. I know that you have already talked and expressed you anguish with them but badger them each hour of each day. I had a little brother that suffered a traumatic brain injury from a hunting accident a good number of years ago and we waited for change each day following the surgery. As time went on, we came to the realization the healing process with the brain can be very slow and so is the recovery time. It seemed like there is a huge valley that you must pass through, as the body try’s to understand and cope with what has happened. I know that the pain you feel is the indescribable sorrow and torment that a loving parent suffers when their child is in agony but (like my family discovered) going to another doctor or hospital may not help. We want so much to do something but most of the time, we are powerless to do much more than wait and trust those who are skilled in the field of medical care. As a parent, my heart goes to you and your family.


----------



## mak2

I would have never thought about you having any trouble in any hospital in that system. If I was you I would not quit complaining to everyone you see, everyone.  Quality wise I think of them as top of the line.  least I did.


----------



## pirate_girl

mak2 said:


> I would have never thought about you having any trouble in any hospital in that system. If I was you I would not quit complaining to everyone you see, everyone.  Quality wise I think of them as top of the line.  least I did.



Clarian has a wonderful reputation around here Mark.
I surely hope something gets done about Melanie's situation, soon!


----------



## Trakternut

All I can say is that the hospital is lucky that ain't my girl in there. There would have been more than one Come-to-Jesus meeting by now.

Somebody owes you a good explanation why they don't see to be too anxious to attack  her pain.  Somebody owes you an explanation why dosage is being treated so carelessly.
Give 'em hell!


----------



## k-dog

My prayers are definitely with you and your family.

I've always found that if the higher ups aren't there or aren't willing to speak with you, the media can generally get a response.  I would contact newspapers and or TV news and get them to talk to the people in the lounges.


----------



## Dargo

mak2 said:


> I would have never thought about you having any trouble in any hospital in that system. If I was you I would not quit complaining to everyone you see, everyone.  Quality wise I think of them as top of the line.  least I did.



Thanks again to all who have posted.  I only quoted Mark's post because it has been my understanding that Methodist Hospital of Indianapolis was my understanding.  Unfortunately, I have found one glaring hole in their service; the holidays.  It is painfully clear that this hospital has failed to insure that it is properly staffed during the holidays.

I do understand that people want off during the holidays.  Really, I do.  I would like to have had a holiday season, but I didn't get one.  I am now in the process of moving Melanie to a hospital who has assured me that they make it a priority that their patients who are missing their own holiday season are not left unattended; especially on 3rd shift.  I am no longer in Indy at the moment because I will not be able to contain myself if I either cannot find nurses late at night when my daughter is in pain and past due for her pain medication, or if I find them sleeping.

To be fair, there are some absolutely wonderful nurses who have cared for her.  I cannot throw a blanket statement out that their care is terrible.  However, I will go on record stating that they have a terrible problem staffing over the holidays and, in my opinion, that severely affects my opinion of them as a whole.  They told me that I was being completely unreasonable when I said "it's not my problem" when they told me that they have to accommodate their employees' requests for time off during the holidays.  It is my strong opinion that *is* their problem and it severely tarnishes their image.

Sincerely, thank each and every one of you for your kind posts.  I need to run now to try to make this move occur tomorrow.


----------



## Cowboy

Thanks for the update on the move Dargo and I beleive it is the right one , You have enough on your plate without dealing with red tape or excuses . Best of luck & continued thoughts & prayers .


----------



## Galvatron

Thanks for taking the time to update....if the move goes ahead i pray it happens smoothly and swift with little upset to Mel.

I hope this starts to get Mel the pain relief she so desperately needs...and peace of mind for you and your family.

Thoughts and prayers ongoing.


----------



## loboloco

Brent, I hope the move works out for you.


----------



## Trakternut

Dargo said:


> They told me that I was being completely unreasonable when I said "it's not my problem" when they told me that they have to accommodate their employees' requests for time off during the holidays.  It is my strong opinion that *is* their problem ..



Hospitals are open 24/7. They need to have proper staffing on duty at all times, no matter if it is a holiday. Drs. and nurses should know that when they enter their field. 

If they want holidays off, they should work in clinics then, not hospitals.

Good move, Dargo! Don't forget to take the remains of the basket with you. Don't want them screwballs eating Mel's chips after the (lack of) care she got from them.

As for the hospital? Shame on them!


----------



## Melensdad

Brent, I know nothing about the hospitals in Indianapolis and their quality, or lack of, but based on what you've written I'm glad to hear that you're moving Melanie out of Methodist.  

I'm in total agreement that holidays are not the problem of the patient, but rather the scheduling problem of the hospital.  They are there to provide health care and therefore they cannot allow their staff to drop below the level of service they NEED to provide.  In your case perhaps their problem is they simply should not have done the surgery a few days before they sent their staff home for a long holiday.  It would have been better for them to simply tell you that you'd get substandard care in their hospital due to insufficient staff, you could have then chosen a different hospital to have the surgery, one that would have been staffed during the holiday period.


----------



## mak2

Here is a tip Brent, if there was PRN pain meds prescribed, and the nurses were not giving them, go after the nurses and hospital.  If there were no prn pain meds and/or call to the doctors go after both, like with an attorney.  This is very simple black and white stuff, dont drop it, think of the next little girl in the same positon.


----------



## rc2james

I am so very sorry that this continues Brent, and like many of us here, we have children and know well the frustrations when our loved ones are suffering. My unskilled advice would be to let the doctors do what they need to do. I do know that they walk a fine line with pain medications that can cause immeasurable problems if improperly administered. All our hopes and prayers are going out to you and your family.


----------



## mak2

Best evidence today suggest that if one is really in pain they do not become addicted to pain meds, no matter how much they take, while in pain.  Most of us nurses that think about studies and evidence based practice realize this means if a pt states they are in pain, give them pain meds.  Sometimes there are polysubstance abuses are call this into question and more studies need to be done.  But with a young, post surgery neuro patient without ICP problems, pain meds should be given as requested.  Anything else is grounds for a bigtime lawsuit.  Most hospital staff arent allowed to say they are short staffed anymore.  This is soo wrong on so many levels.


----------



## Cowboy

Thoughts and continued prayers sent your way Dargo . I dont think it does much good for any of us to say what we would do , You made the right decision IMHO . Theres plenty of time to make things right later on . I hope so very much for things to get better for you all really soon as I'm sure we all do


----------



## BigAl RIP

Nothing to add but best wishes , my friend . Our hearts are breaking knowing Mel is hurting . God Bless


----------



## pirate_girl

mak2 said:


> Best evidence today suggest that if one is really in pain they do not become addicted to pain meds, no matter how much they take, while in pain.  Most of us nurses that think about studies and evidence based practice realize this means if a pt states they are in pain, give them pain meds.  Sometimes there are polysubstance abuses are call this into question and more studies need to be done.  But with a young, post surgery neuro patient without ICP problems, pain meds should be given as requested.  Anything else is grounds for a bigtime lawsuit.  Most hospital staff arent allowed to say they are short staffed anymore.  This is soo wrong on so many levels.




I figured when they had stopped the Fentanyl, and started giving her Vicodin, that was a bad decision for one.

I can understand the short staffing, we in the health care field know that everyone deserves a break, but surely there should have been a doctor(s) appointed to look after her, and better nurses following orders OR even writing scripts for some BETTER pain management.

So Brent, how did checking her out of the hospital go and where have you taken her now?
My God, what a nightmare...


----------



## Dargo

After I made some calls to friends in high places and pulled in all of my favor markers, suddenly we got a pain management team who, after asking the same questions that had been asked for days, decided that she does NOT fit the profile of a drug addict. 

After this was established, they then began with several 'break through' drugs which included IV fentanyl and several other meds and then fentanyl patches for longer term pain management.  They had the nerve to ask us why we had not requested this immediately post op.  Um, I'd never heard of the drug and I sort of thought it was their job and NOT mine to prescribe drugs.

She seems to be at a lower pain level now than she has been since the surgery.  I'm working on getting her moved to a hospital in our town since she needs to be an "in patient" while receiving pain management.  Duh, we never expected to take her home the next day, but we also didn't expect to have all thes problems getting her some sort of pain relief.

I should know more tomorrow.  I did hear mention that her biopsy sample could be getting old if it hasn't been tested yet.  If that is the case and another sample is needed, I will completely blow my top and proceed only with a complete team of attorneys.  I certainly hope not.  The results of the biopsy is the key to how her illness is to be treated from this point on.  We didn't miss the holidays and have the side of her head sawed off just for entertainment!  Hopefully this is a turning point.


----------



## mak2

Was the lab closed too?


----------



## pirate_girl

Thanks Brent.


----------



## Melensdad

mak2 said:


> Was the lab closed too?



First thought that entered my mind, then I realized she had the surgery a few days before the holidays, so even if the lab got it the next day it was still NOT a holiday.  

Honestly I'm shocked by what is happening.  I suppose I could understand it if it was in a small town hospital that doesn't do this type of surgery but this is, from what I can tell, a pretty large hospital group with pretty good reputation and an established track record for providing care and doing more than just the simple things.


----------



## Cowboy

Thanks again Dargo for the update , glad to here the pain level is going down and you seem to have found a team of qualifyed people who finally care . Hopefully it be uphill from here on out and recovery will much quicker . 

  I dont know what to say about them dropping the ball on the biopsy results , but hopefully they didn't and the results will be good news . Continued thoughts and prayers for Mel and your entire familly  

 Kudo's to you for holding it together in a very stressfull situation and handling it properlly , somehow I dont think many of us here would have had that control and more then likelly would have made bad judgements and only made things worse . 

  I know for a fact I would have snapped and without thinking done something really stupid , its in my genes


----------



## Rusty Shackleford

thanks for the update, my friend. i, too, am appalled at the crap that they had put her, and you, through with the pain meds, and docs on 'vacation.' doesnt seem right to me. still thinking of you all.


----------



## Av8r3400

God bless you and Mel, Brent.

Get her healed and get her home.

Then sick the lawyers on this den of incompetence.


----------



## Dargo

Here is hoping that the friend in a high place who got a pain management team has also gotten other things moving.  It was expressed to them that I have absolutely no intention whatsoever to get any attorneys involved or begin any sort of litigation.  However, it was also explained that I was not exactly happy with her treatment and that if I continue to feel that she isn't receiving the care needed, they should make double sure all of their documentation is in order.

Apparently last night was by far the best night she has had since surgery.  She was able to get some rest and they kept on a precise schedule of keeping her pain level tolerable.  To want "no pain" is unreasonable, and we all understand that.  We also understand that writhing in extreme pain for weeks is not acceptable.  Anyway, there has been such a huge change in her pain level that her blood pressure has returned to normal levels and we are moving her today. 

Better yet, since her new medications are not administered via IV, it is possible we may bring her home to heal and visit a local partner hospital for any problems and follow up exams and to remove her staples when it's time.  I hate that it took what was basically a 'hint' that I'd sue and sue in a big way if pushed to get things moving.  Right now, I'm just thrilled that her pain level is down to what she calls a "6" on a scale of 1-10 and is likely coming home!  The last thing I want is trouble and any legal issues!  Maybe a gentle reminder about their service from someone they respect righted the ship.  I'll be thrilled if that's the case.

Now I just need to hear about the biopsy results so we know how treatment will be continued.  I was told her recovery is a journey and we just got delayed at a stage coach stop a bit too long during our journey.  Obviously, I hope the remainder of the journey is smoother and ends the way we want; with a full recovery.  Thanks again to all!!!


----------



## loboloco

Good News. Brent.  It' really a pain in the butt to have to force people to do their jobs, but sometimes it is necessary.  I hope Melanie is doing better every day.


----------



## working woman

Well that is good news!!  Now maybe all of you can get some much needed rest yourselves, now that your little girl isnt in so much pain
Keep us posted on the biopsy results. 
Dont forget anything I can do for you here at home just ask


----------



## Galvatron

Brent it is great news to hear that Mel's pain levels are improving....to be at 6/10 is nearly half way there and i hope zero pain is not to far in the future....i am so sorry you have had to fight to get what should be common sense everyday patient care.

As you say this is going to be a long journey and you are still closer to the beginning than you are the end,but as each day passes you will get a little closer to Mel's full recovery, i just Pray the journey does not take to long and you do not have to have another delayed stage coach stop as you so polity put it.


Try and get some much needed rest for the journey that awaits you.....Mel and all your family are continuous in my thoughts and Prayers....you are doing your Daughter and family proud


----------



## Jim_S RIP

Brent, I'm so glad to hear some good news about Mel.

Jim


----------



## Doc

jim slagle said:


> Brent, I'm so glad to hear some good news about Mel.
> 
> Jim


Me too, glad to hear some positive news.  Good luck with the move.  Hope that works out for the better and you get her home SOON!!!!!!


----------



## Av8r3400

jim slagle said:


> Brent, I'm so glad to hear some good news about Mel.
> 
> Jim



Me three.  I will be continuing to pray for Mel (and you too) to have a less bumpy journey from this point on.


----------



## BigAl RIP

What they said !!!


----------



## fuzznutz

i am so happy to hear that things are finally getting done for her and continue to hope and pray that her recovery will go quickly and smoothly. now that she is getting the pain management she needs hopefully you and the rest of your family will be able to rest a bit easier knowing that she is feeling less pain.


----------



## baldy347

I, too am relieved to hear of some improvement! Take care.
  w.


----------



## pirate_girl

fuzznutz said:


> i am so happy to hear that things are finally getting done for her and continue to hope and pray that her recovery will go quickly and smoothly.* now that she is getting the pain management she needs* hopefully you and the rest of your family will be able to rest a bit easier knowing that she is feeling less pain.


 yup!


----------



## Galvatron

Brent myself and my family are thinking of you tonight......


We all wish Mel a happy new year with a quick recovery....same goes to you and all your family.


----------



## Danang Sailor

Dragonfly Lady and I are keeping all of you in our thoughts, and hoping the new year will see a successful end to all these troubles.


----------



## Melensdad

Brent, here is hoping that you have gotten Mel home and that you have the best New Year of your life.


----------



## Cowboy

Melensdad said:


> Brent, here is hoping that you have gotten Mel home and that you have the best New Year of your life.


 Ditto that , Continued thoughts and prayers for your entire familly Dargo .


----------



## loboloco

Brent to you and your family, May all of you have have a healthy, happy and prosperous new year.  And to Melanie, Hang tough young lady, we all care for and pray for you.


----------



## pirate_girl

Melensdad said:


> Brent, here is hoping that you have gotten Mel home and that you have the best New Year of your life.



The one thing that matters most around here right now.

Happy New Year Brent and family.
I do hope she's where she needs to be and that you all are finding some happiness and comfort as you look toward a new 365.
We're still here for you, and thinking about all of you daily.
God Bless and surround your family in His loving care.


----------



## EastTexFrank

pirate_girl said:


> The one thing that matters most around here right now.
> 
> Happy New Year Brent and family.
> I do hope she's where she needs to be and that you all are finding some happiness and comfort as you look toward a new 365.
> We're still here for you, and thinking about all of you daily.
> God Bless and surround your family in His loving care.



Amen sister.


----------



## lilnixon

pirate_girl said:


> The one thing that matters most around here right now.
> 
> Happy New Year Brent and family.
> I do hope she's where she needs to be and that you all are finding some happiness and comfort as you look toward a new 365.
> We're still here for you, and thinking about all of you daily.
> God Bless and surround your family in His loving care.



Well said PG.

 Brent, 
   John and I have been thinking and praying for you and your family this Holiday season.  We hope the New Year brings Health and Happiness to you and yours.  Please let us know if there is anything we can do.


----------



## loboloco

Anybody heard from Brent today?  I would like to know how the move went and how Melanie is doing if anyone has heard.


----------



## Dargo

loboloco said:


> Anybody heard from Brent today?  I would like to know how the move went and how Melanie is doing if anyone has heard.



Thanks for your concern.  She slept better at home than at the hospital (no surprise), but I think she tried to accommodate too many visitors yesterday and paid for it today.  I call her my "Wonder Child" or my "Million Dollar Baby" in jest.  Either way, I told her that she's going to have to take it a bit slower.

Fortunately, her current boyfriend seems to be a great kid and he came over and waited on her hand and foot today and plans to come over and help again tomorrow.  Even if you hate the Colts, can ya root for them this one time?  Mel is my Colts buddy and is looking forward to watching the game with me tomorrow.  I think their game was moved to the later time slot because of it's playoff importance.  I need to check and see.

She gets her staples out next Friday.  They are really starting to bother her.  I told her I have a tool that removes them from the last time I had some, but I think it best to leave them in as long as prescribed.


----------



## Cowboy

The news just keeps getting better & better , thanks for the update Dargo . I,m sure being home has quite the healing effect in itself . Continued thoughts & prayers for a quick and total recovery  . 

  Oh Yea , GO COLTS !


----------



## Doc

Awesome news Brent.  I'll be happy to root for the Colts just for you and Mel today.  
Go Colts!!!!!!!


----------



## pirate_girl

It's good news for sure Brent 
Root for the Colts?
For Melanie, no problemo


----------



## ki0ho

The household here are die-hard COLT FANS today....Good to read that she is doing better!!!!!


----------



## BigAl RIP

Ah Heck ! I ain't watched football since I got my Stermum broke playing the game in my college days ... 



Just for Mel >>>>>>     GO COLTS !!!

Sounds like she is doing a lot better , Praise the Lord !


----------



## bczoom

Since they're not playing the Steelers, I'll root for the Colts for today.

Glad to head she's doing better!!!!


----------



## RedRocker

Being a Cowboy fan and all, I'm certainly free to
root for another team this year, Colts it is!!


----------



## JackieBlue

That's great news and sounds like she's at the start of her road to recovery.  As always, continued thoughts and prayers!  Happy New Year!

Go Colts!


----------



## Melensdad

Dargo said:


> Even if you hate the Colts, can ya root for them this one time?  Mel is my Colts buddy and is looking forward to watching the game. . .



Brent, I am not a football fan, but for the sake of Mel I'll jump on the bandwagon today.  

*GO COLTS*
   :


----------



## EastTexFrank

RedRocker said:


> Being a Cowboy fan and all, I'm certainly free to
> root for another team this year, Colts it is!!



Ditto.  Heck, what am I saying ... they won!!!!! 

Glad she's doing better.


----------



## pirate_girl

EastTexFrank said:


> Ditto.  Heck, what am I saying ... *they won!!!!! *
> 
> Glad she's doing better.


Yup, and ain't it nice? 
I hope it put a smile on her face.


----------



## muleman RIP

Glad to hear she is doing better at home. She needs time for healing right now. Best of luck for all.


----------



## Trakternut

Y'know...I bet this Colts win is a sign of things to come.


----------



## Dargo

Thanks again to all, and I am very sincere when I say that.  The only bad part is that I think she pushed things too much yesterday and had several visitors during the day.  By half time of the Colt's game, she was curled up on the couch in pain and couldn't open her eyes.  Still, she refused to go up to her bed and insisted on listening to the game.  Even in the pain, she had a little smile, or smirk, on her face as I took her up to bed.

The funny part was, and she speaks very, very quietly now, was that just when it looked like the Colts were going to lose it, she said "Collins will blow it.  He's a loser and a jerk".  Sure enough, he did.  

Her "jerk" comments come from the time I took her and my son to a Giant's game when one of my friend's son played for them and Collins was their QB.  After the day before practice (more of a walk through for the public), a group of disabled children crowded by the fence and wanted Collins' autograph.  He told them that he only signed autographs at the other end of the field, to which they all hobbled and motored towards the other end of the field.  He laughed and told Tiki Barber "Now that's how you get rid of the retards".  I've always disliked him since then as well.


----------



## loboloco

Brent, has the swelling and pain reduced by now?  How is she doing otherwise?  How are you and the Missus doing?


----------



## Galvatron

Continued Prayers and positive thoughts.....there sure is no place like home.


----------



## Doc

I hope Mel is progressing nicely, getting a little better day by day.

I have $35 left over that was donated for Mel.  
Someone suggested an Amazon gift card might be good, or any type of gift card.  Does anyone else have some other suggestion?  

Brent & Mel can review the suggestions and pick which one they prefer.

Brent, if you know of something in particular Mel would like just let me know what it is and I'll order it and have it sent to your house.  It does not have to be right at $35, in the ballpark is okay by me.


----------



## Melensdad

If she has an iPod then an iTunes gift card would be a good choice, but Brent would have to let you know if she has an iPod.


----------



## Dargo

Melensdad said:


> If she has an iPod then an iTunes gift card would be a good choice, but Brent would have to let you know if she has an iPod.



I can't express the sincere thanks to all for how wonderfully kind everyone has been.  Again, thank you!

Yes Bob, Melanie does have an iPhone which obviously includes an iPod.  We practically had to pull it from her hands as she went to surgery and, as soon as she was out of recovery, it was the first thing she asked for.  I'm sure she'd love an iTunes gift card; especially since I have given them an allowance of $0.00 to make purchases at the Apple store.


----------



## Doc

Well you folks never cease to surprise me.  I have had another generous donation and an excellent suggestion for something special for Melanie.  Melanie should have a package delivered in 7 to 10 days.
My sincere thanks goes out to all members of FF who helped us show a little support for Brent and Melanie during this trying time.  You all are AWESOME!!!!!!

Brent, both you and Melanie are in my thoughts and prayers.


----------



## Trakternut

Doc said:


> Well you folks never cease to surprise me.  I have had another generous donation and an excellent suggestion for something special for Melanie.  Melanie should have a package delivered in 7 to 10 days.
> My sincere thanks goes out to all members of FF who helped us show a little support for Brent and Melanie during this trying time.  You all are AWESOME!!!!!!
> 
> Brent, both you and Melanie are in my thoughts and prayers.



It's what Family does, Doc.


----------



## muleman RIP

Hopefully she can concentrate on getting better and being a teen again. Best wishes for her recovery and good job on being her advocate Brent.


----------



## Dargo

I just read through this long thread and I have to say that it really touches my heart to read so many wonderful and kind comments from people who have never even met Melanie, now me for that matter.  It really helps lift my hope in the thought that I want to have and that is; there is good in everyone, it just is hard to find in some.  With this group, there was never any doubt nor need to look for the genuine kind and caring people on this forum.  Again, thank you all so much.  This is my little private escape.

The "diagnosis" that we were given a couple days ago has now been sort of withdrawn.  I'm not being critical of the neurologists and surgeons but, dang, this is really getting long and painful in many ways.  For those who care to look it up (I'd be shocked if anyone had heard of it, I sure hadn't), it was "Tolosa Hunt Syndrome".  However, with Melanie's seemingly fast regression in the last couple of days, they, the group of neurologists and physicians, are not so sure that is what she has.  This is yet another dive on the roller coaster journey.  If it was Tolosa Hunt, a regimen of 5 days of powerful IV steroids with a rapid detox would, in theory, clear up her symptoms in about 72 hours.  We were cautiously ecstatic until they called again and canceled the steroid treatment and are wanting us to take her up there again for "more tests".

I'm going to likely miss one of her appointments since it's next Thursday and I did one too many break dancing face plants with my knee going out (some may recall I talked about having knee surgery about 5 months ago - just before this started).  I now really can't walk and have surgery on Wednesday.  I suppose I'll just have to be tough and make the trip the next day one way or another.

Anyway, I thought I'd post a 'normal' picture of the little girl you have all prayed for and have made so many kind comments about.  I'll then post a not too gross picture of the staples that were in her head.  Since I've removed enough of them from my own body after injuries and had the removal tool, the lead neurologist/surgeon deemed me competent enough to remove them.  She says it feels better with them out.


----------



## Trakternut

She's a gorgeous  young lady, Dargo.  Continued prayers for her healing. The Almighty has her in the palm of His great hand. Hang with us, Buddy. Tell her that she's got a huge fan club and we're all hoping for the best.


----------



## JackieBlue

She's a beautiful young lady.  I will continue to keep her in my thoughts and prayers.


----------



## loboloco

Dang Bent, how did you manage to produce that pretty offspring?  Tell her we are all pulling for her, and good luck on your knee surgery.  Docs have been warning me for 20 years I'm gonna have to get it done, but I can still walk so I've managed to avoid it.
Tell Melanie she has a bunch of adoptive Aunts and Uncles out here rooting for her.


----------



## pirate_girl

loboloco said:


> Tell Melanie she has a bunch of adoptive Aunts and Uncles out here rooting for her.


  What he said.
Thank you Brent!


----------



## Cowboy

Trakternut said:


> She's a gorgeous young lady, Dargo. Continued prayers for her healing. The Almighty has her in the palm of His great hand. Hang with us, Buddy. Tell her that she's got a huge fan club and we're all hoping for the best.


 I cant say it any better then that . continued thoughts & Prayers from here . Thanks for the update & pics Dargo .


----------



## RedRocker

Still praying here.


----------



## Galvatron

Thanks again Brent for taking the time to update.....the pictures bring a lump straight up in my throat....such a pretty young Lady having to go through so much is heart wrenching.

Prayers and positive thoughts ongoing.


----------



## Melensdad

Brent, pretty as Mel may be, the only picture I really care to see is the one that will come at some point in the future, its the one the shows her COMPLETELY RECOVERED from this whole nightmare that she has been through.  While I do check this thread for progress reports and while we talk about her at our family dinner table, we really are looking forward to the day when we get the "clean bill of health" report.  That is the day the I will look forward to seeing Melanie's photo.  

Good luck with your upcoming surgery.  Take care of yourself so you can take care of your family.  

Oh, but since you've been whining like a little baby about the knee for several months don't count on getting a fruit basket from us while you are in recovery


----------



## Doc

Melensdad said:


> Brent, pretty as Mel may be, the only picture I really care to see is the one that will come at some point in the future, its the one the shows her COMPLETELY RECOVERED from this whole nightmare that she has been through.  While I do check this thread for progress reports and while we talk about her at our family dinner table, we really are looking forward to the day when we get the "clean bill of health" report.  That is the day the I will look forward to seeing Melanie's photo.
> 
> Good luck with your upcoming surgery.  Take care of yourself so you can take care of your family.
> 
> *Oh, but since you've been whining like a little baby about the knee for several months don't count on getting a fruit basket from us while you are in recovery *



Bob you are quite the card.  LOL   

...but I will admit I agree with all you said.    I so look forward to seeing Melanie fully recovered and hearing about her successes at college.  I'll be a fan of hers forever and count on Brent keeping us posted in a timely fashion.


----------



## working woman

Melanie's seemingly fast regression in the last couple of days, they, the group of neurologists and physicians, are not so sure that is what she has.  take her up there again for "more tests".

Am sorry to hear she has to go through more testing. Much Less not having  the correct diagnoses

- I now really can't walk and have surgery on Wednesday. I suppose I'll just have to be tough and make the trip the next day one way or another.


If you in no condition to drive just call and I'll take your butt up there so you get up there safe. After all what are friends for?


Continued prayers and better news


----------



## Dargo

Melensdad said:


> Oh, but since you've been whining like a little baby about the knee for several months don't count on getting a fruit basket from us while you are in recovery



Thanks 'man with pink rifle'.   I was sort of hoping you could come by and help me with my passive motion machine on my knee so I can get it rehabbed to the point where I can have my back surgery.

Yeah, I'm starting to pay for all those years when someone said "Nobody can do that!", to which I'd say "Oh yeah, hold my beer and just watch".  Yeah, yeah, I know; you lived on the other side of the tracks and you guys took a more cerebral approach to things than that.  But, hey, somebody had to give the school infirmary some practice at stitching up wounds and keep Crawfordsville's "Tokyo General" in business. 

But, you're right.  I've always said no sympathy for self inflicted wounds; whether it was a bad hangover or from bad choices after enjoying a few too many adult beverages.  Clearly, my baby little girl doesn't fall into either of those categories.  I deserve it, she doesn't.

Hey, her boyfriend just showed up to watch both NFL playoff games with us today.  I may slip her one extra of her pain pills (which is allowed per instructions), hoping she'll feel better by the time the Colt's play later today.


----------



## Melensdad

Dargo said:


> . . .I'm starting to pay for all those years when someone said "Nobody can do that!", to which I'd say "Oh yeah, hold my beer and just watch".  Yeah, yeah, I know; you lived on the other side of the tracks and you guys took a more cerebral approach to things than that.  But, hey, somebody had to give the school infirmary some practice at stitching up wounds . . .



I need to lock you in a room with my brother.  A couple weeks after having surgery on his knee to reattach a tendon he fell and broke his kneecap into 3 pieces.  I feel healthy every time I go to his house.

But back to Mel, the important patient we all come to this thread to read about, I have to ask, is her daily pain diminished any?  Have you given any consideration to getting her up to Chicago, out to Johns Hopkins, over to Mayo?  I realize that diagnosis is never easy and I realize the doctors now are looking for the best odds to help her, but I wonder if a bigger hospital with more specialized teams might be able to get to the bottom of her problems a bit quicker to relieve her pain and get her back to living her life.


----------



## bczoom

The Zoom family still has Mel in our thoughts and prayers.  We'll add you and your knee to our prayers as well.


----------



## Danang Sailor

bczoom said:


> The Zoom family still has Mel in our thoughts and prayers.  We'll add you and your knee to our prayers as well.





What he said!!


----------



## Dargo

Melensdad said:


> But back to Mel, the important patient we all come to this thread to read about, I have to ask, is her daily pain diminished any?  Have you given any consideration to getting her up to Chicago, out to Johns Hopkins, over to Mayo?  I realize that diagnosis is never easy and I realize the doctors now are looking for the best odds to help her, but I wonder if a bigger hospital with more specialized teams might be able to get to the bottom of her problems a bit quicker to relieve her pain and get her back to living her life.



According to her, her pain runs between a 6 and 8.  I'm really concerned now because this morning her right eye, previously unaffected, will no longer look up past level.   As you correctly noted, I need no sympathy, but this is killing me watching her not only get better, but seeing new symptoms develop after all these months and the pain of brain surgery.

She has an appointment with an infectionist disease neurologist in Indy on Friday now.  If that doesn't work, I need to find me an RV place locally that can "winter-proof" my RV so I can take off to Mayo of Johns Hopkins or even Boston with her.  Right now my RV has all the holding tanks and water lines exposed under the coach.  There has to be some sort of winter kit that can be added to the coach so it can be used in temps below 32 degrees.


----------



## muleman RIP

You could always just use RV antifreeze in the system and only use the water for toilet use. Buy a few cases of spring water for drinking, cooking and brushing teeth. The RV antifreeze won't hurt you and if you don't mind smelling like a candy cane you can shower with it.


----------



## Dargo

muleman said:


> You could always just use RV antifreeze in the system and only use the water for toilet use. Buy a few cases of spring water for drinking, cooking and brushing teeth. The RV antifreeze won't hurt you and if you don't mind smelling like a candy cane you can shower with it.



That's what's in there now; lines and a little in each tank.  I could get by with the toilet, but I don't think I could take a shower or use the washing machine with antifreeze.  Hopefully there is some place that could install some sort of kit.  I know I've seen plenty of larger coaches running around in the winter.  They all can't be going around without water.  I suppose I'll have to start making calls Monday am.


----------



## Dargo

Thank you all so much for the wonderful bear Melanie received today!  She was really moved and absolutely LOVES the bear.  I tried to get a picture of her napping this afternoon since she was cuddling with it, but it was too dark for the picture to come out and I didn't want to use a flash.  Believe me, she loves it!  You guys done good!!! 

She goes back to Indy tomorrow for what will likely be her last trip there.  Since we seem to be getting nowhere with the physicians and hospitals in Indy, I feel I have no choice but to take her somewhere else; likely Children's Hospital in Boston.  

Unfortunately, I cannot travel to Indy with her tomorrow, so I'm having my wife record everything for me.  My knee surgery yesterday was a bit more than was expected.  I was told in no uncertain terms today, no travel, no weight bearing on that leg and elevation and ice packs for a week or I'm headed for knee replacement.  Yeah, they got my attention with that one.   I had no intention of missing this trip, but my wife and Mel pretty well nixed me going.  I'll be no good for any possible trip to Boston if I'm back in the hospital for knee replacement. 

Anyway, since she couldn't read it, I read most all of this thread to her and she was extremely moved at how many people who don't know her can show so much kindness towards her.  Little smarty britches somehow figured out who WorkingWoman was with almost no clues on here.  Thanks you Judy.  Your very kind start to all of this is not unnoticed by me.  And, no, that's not why I cleared your parent's driveway and street.  If you didn't hear, I just happened to stop just past your parent's place and didn't get the next driveway I've been clearing for the last 10 years.  It sort of ticked me off when I asked for one small favor from him that would have taken maybe 10 minutes and he said he just couldn't do it. (sorry, inside little issue WorkingWoman would understand).

Thanks again to all!!!!!!!!!


----------



## Doc

I'm glad she got it and likes it.    
Guys, I had no way to tell all of you but thanks to your generosity we got Melanie a "Vermont Teddy Bear" dressed in blue like a Colts cheerleader with Melanie's name on the front.  It came from here:
http://www.vermontteddybear.com/Def...=TC|14358|vermont bear||S|b|5934826335&bhcp=1

Thanks to a member who prefers to remain unnamed for suggesting this idea.  I think it was a good one.


----------



## Doc

I'm glad she got it and likes it.    
Guys, I had no way to tell all of you but thanks to your generosity we got Melanie a "Vermont Teddy Bear" dressed in blue like a Colts cheerleader with Melanie's name on the front.  It came from here:
http://www.vermontteddybear.com/Def...=TC|14358|vermont bear||S|b|5934826335&bhcp=1

Thanks to a member who prefers to remain unnamed for suggesting this idea.  I think it was a good one.


----------



## muleman RIP

Well hope the bear keeps her spirits up for what lies ahead. I don't endorse the Colts blue at all! Maybe green and gold for the Packers or black and gold for the Steelers!


----------



## EastTexFrank

muleman said:


> Well hope the bear keeps her spirits up for what lies ahead. I don't endorse the Colts blue at all! Maybe green and gold for the Packers or black and gold for the Steelers!



To hell with that.  

I can suck it up about the Colts thing 'coz Payton went to U. of Tennessee but I'd really prefer something with a big Cowboys star on it.  

Doc, you did good.

Dargo, hang in there buddy.  Tell Mel that we're all still pulling for her.


----------



## Melensdad

EastTexFrank said:


> Dargo, hang in there buddy.  Tell Mel that we're all still pulling for her.


Not sure about the rest of you but this is still the thread I look for every day, early morning, and before I go to bed.  Even if I've been busy and out all day I look for updates about Mel on this thread without fail.  

As for that minor knee problem, just suck it up.


----------



## rback33

Melensdad said:


> Not sure about the rest of you but this is still the thread I look for every day, early morning, and before I go to bed.  Even if I've been busy and out all day I look for updates about Mel on this thread without fail.
> 
> As for that minor knee problem, just suck it up.



Me too Bob! I had noticed a lack of an update and was going to ask for one, but then it slipped my mind. Take care of yourself and your little girl Brent. We are all still thinking about you.


----------



## rback33

OK.. It's been 10 days since this thread was active. Has anyone heard from Brent?


----------



## muleman RIP

He got his knee operation and was working on his truck but farmed that out. I don't know if he got his motor home ready for a cold trip to Boston or not.


----------



## Dargo

Hey all, sorry for no updates, but I assure you things have not been quiet.  I don't know if it's from the medications or additional symptoms, but Melanie has now fallen down several steps 4 times now.  She really can't function and is sleeping roughly 18 hours a day.

I couldn't travel to Indy last Friday due to just having knee surgery, but I was shocked and appalled at the "Final Report" given by one of her lead physicians.  It was so full of errors, misinformation and things that were completely wrong that I had to drop everything else and immerse myself in this 100% rather than just "follow doctor's orders" as given to her.  A 'for example' of incorrect information on Mel's "Final Report" explained how they were treating 'facial pain'.  WTF?!  She's *never* had _facial_ pain!  She's been basically blind and has suffered from severe inter cranial pain and optic nerve pain.

After reading this severe misinformation, I nearly panicked when I spoke with several neurologists and they told me that 'facial pain' can be quite severe.  However, I was told by all physicians and neurologists that facial pain is almost always related to postherpetic neuralgias, which is something Melanie has never exhibited, has never been mentioned and is related to shingles and is caused by a varicella zoster virus, for which she has never tested positive!  There are also physicians who are named who state that they have seen Melanie and have been involved the entire time who we've never heard of and have never seen Melanie.  After I read this 'report' to Melanie, she quickly spiraled into a deep depression and said "Great, they want me to just do nothing but take these worthless pills and see me again in 3 to 6 months.  Why don't I just go pick out my coffin now so I can be sure it's a nice pretty one".

Needless to say, that is crushing to a father; especially since Mel has been unbelievably courageous, strong, and put up with unimaginable pain along with (very depressing for a beautiful young lady) a huge amount of water weight gain from massive doses of steroids for almost 6 months which, now, I'm told should have been stopped 3 or 4 months ago when they did not help.  So, after much consultation, we went to Indianapolis again yesterday to have another 4 tesla high contrast MRI performed and to meet with her actual surgeon; the first time since he performed her surgery.

He seemed confused and kept asking "who is running this case".  All we could say is "We want to know the same thing!"  Half of the day yesterday was spent trying to get a complete copy of *everything* they have done and DVD's of all her scans.  I am to send all of this information to my wonderful 'behind the scenes' physician in Boston for him to review and for his colleges to review.  If necessary, I already have a verbal "bring her in" to Children's Hospital of Boston, which is the nation's highest rated hospital.  However, I must send them all the information on what has been done first, so they do not waste precious time and resources performing tests that have already been performed.  They also can look at the tests and arrive at their own conclusions.  Although I said I'd just stay and wait for all the copies of the records, they insisted it would be a "day or so" and they'd mail them to me. 

So; she is worse now than when we took her to Indianapolis and before her brain surgery.  She is exhibiting new symptoms, further loss of vision and extreme confusion and depression.  It's killing me to wait any longer, but it seems I don't have any choice and I am way behind in my own business.  Within one day, I can have my coach packed and leave for Boston and just live in the hospital's parking lot there until something is resolved.  I don't know if that is what is going to happen, but it is becoming increasingly hard for me to not start asking some extremely blunt questions of several physicians who have treated Melanie in Indianapolis; especially the one who saw her exactly 1 time and wrote her completely incorrect "Final Report".

I feel that I've been very patient and understanding with the physicians because medicine is not an exact science.  However, with her condition getting worse and the almost completely incorrect (in every aspect) "Final Report" given, I cannot sit and wait much longer at all.  I want to simply get her cured.  Then, if there was some gross negligence along the way in Indianapolis, I feel obligated to pursue that issue as well not only for Mel, but for future patients.  However, at this point, I just do not know exactly what is the case in that aspect; but I will find out when appropriate.

As always, thank you all so much!  You all have been a great help.  I'm trying my best, but now I'm beginning to start unraveling myself with so many inconsistencies and flat out errors.  I do not know what is appropriate conduct for physicians and hospitals, but I do know how I can get in contact with people who can tell me.  This is not only taking a severe toll on Melanie, but on so many other things that I cannot begin to describe.  As I said, my main goal is to get Melanie better.  I'll never lose sight of that goal.  Thanks again!


----------



## pirate_girl

Brent, I don't even know what to say other than I'll continue to pray for your entire family and hope this gets resolved as soon as possible.
What a mess it seems to have become now.


----------



## JackieBlue

This is just awful.  I am truly sorry.  I will keep her in my prayers.


----------



## Cowboy

pirate_girl said:


> Brent, I don't even know what to say other than I'll continue to pray for your entire family and hope this gets resolved as soon as possible.
> What a mess it seems to have become now.


 


JackieBlue said:


> This is just awful. I am truly sorry. I will keep her in my prayers.


 
Not much more to add other the continued thoughts & prayers . I'm really sorry to here what all you all are going through but it sounds like you are taking the needed steps . Just hang in there as I can't even imagine the toll it's taking on your entire family . Thanks for the update .


----------



## Doc

Dang Brent, I'm sure this has to be a huge toll on the entire family.  Mel and your family are in my thoughts and prayers daily.  I hope you can get all the paperwork and get her to Boston.  Sure sounds like the best option at this point.
If there is anything I can do from afar to help in some way please do not hesitate to ask.  I'm here for you.


----------



## mak2

Sorry to hear Brent, praying for you, Mel and family.


----------



## Doc

Dang Brent, I'm sure this has to be a huge toll on the entire family.  Mel and your family are in my thoughts and prayers daily.  I hope you can get all the paperwork and get her to Boston.  Sure sounds like the best option at this point.
If there is anything I can do from afar to help in some way please do not hesitate to ask.  I'm here for you.


----------



## jimbo

Doc said:


> Dang Brent, I'm sure this has to be a huge toll on the entire family.  Mel and your family are in my thoughts and prayers daily.  I hope you can get all the paperwork and get her to Boston.  Sure sounds like the best option at this point.
> If there is anything I can do from afar to help in some way please do not hesitate to ask.  I'm here for you.


Same here Brent, I think that speaks for all on this forum


----------



## snow dog

Doc said:


> Dang Brent, I'm sure this has to be a huge toll on the entire family. Mel and your family are in my thoughts and prayers daily. I hope you can get all the paperwork and get her to Boston. Sure sounds like the best option at this point.
> If there is anything I can do from afar to help in some way please do not hesitate to ask. I'm here for you.


 



doc speaks so good. I will continue to pray for you all.


----------



## EastTexFrank

mak2 said:


> Sorry to hear Brent, praying for you, Mel and family.



What he said.


----------



## Galvatron

Prayers and positive thoughts ongoing.....i am sorry i cant offer more


Hang in there Brent......and thanks for taking the time to post the update.


----------



## RedRocker

I learned some time ago that when dealing with multiple doctors that YOU had better stay on top of things, because they don't!! But you know that already, I was shocked to hear you just now talked to the surgeon, unbelievable. Seems like he would have been among the first to show up after the surgery. Go to Boston bro, asap! Prayers from here.


----------



## tsaw

I might not have a good relationship with the man upstairs, but if I have just a bit - I ask him to make Melanie heal - and get well.


----------



## lilnixon

Doc said:


> Dang Brent, I'm sure this has to be a huge toll on the entire family.  Mel and your family are in my thoughts and prayers daily.  I hope you can get all the paperwork and get her to Boston.  Sure sounds like the best option at this point.
> If there is anything I can do from afar to help in some way please do not hesitate to ask.  I'm here for you.



Ditto on what DOC said..  Brent please let us know if there is ANYTHING at all John or I can do for your and your family.


----------



## baldy347

Brent, i've been unable to get on line for a while but have not forgotten what Mel and all of your family have been up against. my heart goes out to you. i can't say it any better than all the others here. Best wishes,wayne


----------



## muleman RIP

I am sure his daughter and family are his priority right now and we will hear from him when he has a moment to spare. Hopefully he is in Boston getting her the care she needs and the outlook will improve. Prayers for all. Stay strong.


----------



## loboloco

We are still thinking about and praying for Mel and Brent both.


----------



## Dargo

Thanks all. We have another "thin slice" CT scan scheduled for Monday and are *still* waiting for copies of all of her records to send to the top physicians in Boston.  The idea is to have them review the facts and, if possible, perhaps have her treated via their instructions in St. Louis.  If that cannot happen; to Boston I go until...?

Right now it's really depressing because she is only awake 3-5 hours a day now and is really hurting when she is awake.  I would be lying if I said this isn't taking it's mental toll on me as well.  I apologize now if I seem snappy or short in other threads.  Thanks again for everyone's wonderful words of encouragement and support!


----------



## Doc

Dargo said:


> * I apologize now if I seem snappy or short in other threads.*  Thanks again for everyone's wonderful words of encouragement and support!



Brent there is absolutely no need to apologize.  While we are going through this with you in a way, I cannot imagine the toll it would take on me as the dad of my daughter in so much pain and not a blessed thing you can do about it ...other than keep on trying to be positive and staying on top of the doctors the paperwork and all the other stuff, all the while trying to keep your family sane.  I'm sure your boys are concerned but they also are going on with their lives not understanding the full impact of all this.  That has to be tough and I'm sure there are so many other little things I cannot even fathom (like trying to keep your business going while your focus is on the family).

IOW's when you come here to post in another thread to take your mind off all the pressures you are dealing with for a second or two, relax as much as possible and post what you feel.  We will not worry about you being short or sharp in replies as we have a clue what you are going through even though we do not fully understand all the pressures that must be on you right now.


----------



## jimbo

Well said, Doc


----------



## working woman

Brent First off, Thanks for taking the time for the update. Know that your daughter and family are still in my thoughts and prayers. I know its not easy for you or your wife to go through this. Much less Melanie. 

Only thing I can tell you is to tell her to keep fighting!!! As for you, be strong and hang in there. All of you will get through this.

In the meantime,is there anything we can do here on the forum to boost her spirit a little? Would it help if we all sent her something simple as a card?   Let her know we haven't forgotten about her?  ( Understandably instead of posting your address on the forum maybe people could pm me or doc and we could give your p o box?  )


----------



## loboloco

Brent, keep your eye on the ball, man.  Don't worry about flaking on us in other parts of the forum, we understand.  Your priority now is Melanie, and that is as it should be.  If there is anything a broke down Carolina hillbilly can do for you, let me know.


----------



## BigAl RIP

Our family's prayers are with you .


----------



## pirate_girl

Still thinking about you all Brent.


----------



## Danang Sailor

loboloco said:


> Brent, keep your eye on the ball, man.  Don't worry about flaking on us in other parts of the forum, we understand.  Your priority now is Melanie, and that is as it should be.  If there is anything a broke down Carolina hillbilly can do for you, let me know.



Like he said ... if a crazy Kansan can help, just yell.


----------



## Melensdad

Anyone want to chip in to buy some "gas cards" for the trip to Boston?  (or somewhere similar)

Its obvious that Melanie needs to go, the only question is when the specialists can see her and begin a proper course of treatment.


----------



## muleman RIP

Let me know.


----------



## bczoom

I'm in too Bob.

Continued thoughts and prayers.


----------



## bczoom

I'm in too Bob.

Continued thoughts and prayers.


----------



## muleman RIP

Brian is in for double!


----------



## Big Dog

I volunteer Doc to collect it ..............


----------



## rlk

I'm in.  Great idea.  Let us know how/when.

Thanks, Bob


----------



## EastTexFrank

I'm in.  Details please.


----------



## working woman

hey, I'm in to. But do you think we should make it one of those visa gift cards? That way he can use it at any gas station he wants?


also, I can get this and drop it off in his box since we live in the same town  if you want


----------



## Dargo

Thanks gang, your kindness and generosity is amazing.  We get to spend the day tomorrow getting more scans.  If the rest of her records are not here from Indy by Tuesday, I may need money for bail on Wednesday in Indy.  Some of these physicians do not understand that I can see her degrade each day in front of my eyes.  Others are great physicians, but they can only do so much.

If those records are not here by the end of the day Tuesday, Methodist Hospital record's department is going to have a rather insistent and forceful middle aged man with a cane who is going to refuse to take 
"later" for an answer.


----------



## muleman RIP

My wife got the same run around from Cleveland Clinic when we were leaving to come back to Elmira. She finally got most of them by sitting in person in the director of records office for about half a day. I had wanted her to wheel me down there and let me have a few accidents with the plastic urinal to get their attention. She left there with a phone book sized stack for the ride home.


----------



## bczoom

Brent,

If you're having issues like this, ask for the Administrator on Duty.  They're bound (by law?) to see you.  Things will move very quickly once they're involved.


----------



## lilnixon

John and I are in.  Just let us know where to send it.


----------



## Doc

Big Dog said:


> I volunteer Doc to collect it ..............


I have no problem with that if yall want to show your support for Brent use the site supporter button or paypal button at the top of each page.  I'll turn it into a gas card (or like WW suggested a Visa card) of Brent's choice and get it to him.  
Please note in your donation your member name here and that it is for Mel and Brent.
If you prefer to send a check that is fine also PM me for my snail mail address and let me know what is coming so I can be sure to include all the funds.


----------



## Melensdad

I have 2 thoughts on this and sorry I didn't get back to this thread sooner.

First is we each simply send a gas card/gift card etc directly to Working Woman, she can personally deliver it to Brent.  

Second we use the PayPal button and go through Doc.  Doc then sends a gift card for gas to Brent or to WW who takes it to Brent.

Of the various scenarios those are the easiest that I come up with.

In any case, I'm in.  And I suspect that Brent won't be driving this week because of the storm so we probably have until Monday or Tuesday to get this accomplished because the roads from Evansville to Boston are currently CLOSED due to the ice & snow storm.


----------



## Big Dog

Doc said:


> I have no problem with that if yall want to show your support for Brent use the site supporter button or paypal button at the top of each page.  I'll turn it into a gas card (or like WW suggested a Visa card) of Brent's choice and get it to him.
> Please note in your donation your member name here and that it is for Mel and Brent.
> If you prefer to send a check that is fine also PM me for my snail mail address and let me know what is coming so I can be sure to include all the funds.




Start checking your PP account .................... !


----------



## muleman RIP

Did the paypal with a note.


----------



## bczoom

I too did PayPal with note.


----------



## snow dog

I did Pay pal too,, thanks guys


----------



## Doc

I've got the paypal donations.  But also heard of some having trouble with that interface.  It might be easier to simply paypal the money to my paypal email account.  All you do when you get into your paypal account is click the send money button and then supply the email of the recipeint and the amount you want to send.  It also gives you a comment box to give your member name and that your donation is for Mel.  So if anyone prefers doing it that way here is my email address (Please remind me to remove this address in a few days, no need to leave it hear forever).

gregp  AT  DOTHQ    .com    take out the spaces & CAPS and change the AT to an @ 

For those sending through me, I figure we can get a card and put everyone's member name on it who contributes this time.  If you prefer NOT to be listed on a card like this be sure to let me know.


----------



## Doc

Wow, you guys and gals never cease to amaze me.  I think it would be tacky to name names ...but so far you all have donated over 300 dollars to the cause.  And I know there are at least two more on the way via snail mail.  I'm sure Brent will appreciate all the help and good wishes coming his way.  Judy, still not sure on which way to do this, I'll investigate possibilities and be in touch with you tomorrow.


----------



## muleman RIP

We are a family! With misfits,black sheep and lots of bitching and fighting. But when times are tough we pull together! When they get better we go back to nitpickin.


----------



## Doc

muleman said:


> We are a family! With misfits,black sheep and lots of bitching and fighting. But when times are tough we pull together! When they get better we go back to nitpickin.


You are Right On Bill, just like all good families do.


----------



## nixon

Doc said:


> Wow, you guys and gals never cease to amaze me.  I think it would be tacky to name names ...but so far you all have donated over 300 dollars to the cause.  And I know there are at least two more on the way via snail mail.



That's one of the things that IMHO makes FF special .  We at times get into verbal scuffles ,but when one of Us is in need , We close ranks and do the right thing . That's how it should be with family . 
Brent , what ever I can do for Your family , I will . 
All the best to You , John


----------



## Dargo

Wow, I'm lost for words.  You guys are amazing!  We've been gone for more tests and now beginning what could be an extremely nasty battle with Methodist Hospital in Indianapolis.  It seems that the "Records Department" has lost three (3) written requests for Melanie's records to be sent to Children's Hospital of Boston.  They've only sent a couple of MRI scans and CT scans along with an unbelievably incorrect "Final Report" from a Dr. Roos at Methodist.

I'm now naming physician's names and absolutely DARING them to challenge me.  This Dr. Roos saw Melanie once for about 20 minutes.  However, in that 20 minutes, she claimed that she has been working with Melanie during her entire stay at Methodist and has been her attending.  Worse yet, in her "Final Report" she grossly missed on reporting the symptoms, treatments and even her surgical procedure.  I was billed over $500 for this completely worthless visit and less than worthless "Final Report" from this so called physician.  Dr. Roos is a fraud and a danger to patients at Methodist.

Now I have the physicians at Boston wondering what is going on and am forced to go meet with an attorney this morning to, if necessary, get a court order for Methodist to release Melanie's records so she can continue to be treated rather than simply left in pain for weeks on end laying on our couch.  Administrators at Boston are now offering to contact Methodist to inquire about this unacceptable loss of service.  Sorry for the strong change in demeanor, but something is very, very wrong at Methodist and it is very possible that it can be causing further damage to Melanie due to the weeks of waiting for records we were told were on the way only to discover yesterday that they have no requests for records.

After being with Melanie most all of the time I can, I am absolutely livid at Methodist and their completely broken system.  Other than a few outstanding physicians we've seen, Methodist appears to be right at the state of the art 1960's hospital, looks and all, with a completely failed system of communication within their organization.  I'm crushed and feel that I should have questioned them sooner rather than just accepting "the records are on their way".  My hesitation to become stern with Methodist has cost Melanie at least 2 extra weeks of laying on the couch in pain.


----------



## Doc

man, I am at a loss for words Brent.  How can a hospital that has such a GREAT reputation do such a horrible job?   I am sorry to hear you have to deal with an attorney at tiime like this.  All you want is the records and to move forward on getting Mel to Boston.  

Thanks to you all for your generous donations for the gas card.  We had two donations of over $100 so we should be able to pay for a large part of the gas costs for the trip to Boston.  
I would like to shut down this effort at 8pm tonight, so no donations after 8pm.  Anyone wanting to send a check, I will cover the amount being sent so that it's no problem for the check to get into my hands sometime next week.   
I am working out details with Judy (working woman) in hopes that we can get this in Brent's hands sometime this weekend.


----------



## Melensdad

Doc said:


> I am working out details with Judy (working woman) in hopes that we can get this in Brent's hands sometime this weekend.



Doc, thanks for picking up the ball on this and handling the logistics


----------



## Doc

Melensdad said:


> Doc, thanks for picking up the ball on this and handling the logistics


No problem at all Bob, Thank you for coming up with the idea.   

I'm simply glad that we (as a team) can come together to give Brent a little ray of sunshine in the nightmare he is fighting his way through.


----------



## Dargo

Again, you guys are so great, I don't know what to say.  I now have Children's in Boston scheduling a call to the administration of Methodist to ask about their internal problems and how much trouble could come of their internal problems if it causes more damage to a sick little girl.  They assured me that they could get things moving faster than any attorney.  I don't know anything about a hospital having to keep their "accreditation", but that may be questioned in this conversation; I don't know.  They just seemed confident that they wouldn't get the run-around and blown off like I have.  I hope so!  Something is changing because Melanie has some new bruising coming to the surface around her incision and around her left eye.  That is concerning me.

Again, thank you so much to every single person who has been supportive in this time of crisis.  I sincerely hope nobody else ever has to go through what Melanie is going through.  Anything that can even remotely raise her attitude or make her smile is priceless.  You guys have been great!  Thanks again!


----------



## Doc

That sure sounds like a GREAT way to go with one Hospital talking with the other to the the records and info they need.   I hope they can get through to them and get the ball rolling.


----------



## working woman

Hey all, just wanted to give you an update to let you know that the gift card we got for Brent and Mel was delivered today in person. I must say for the first time since I've known Brent he was speechless! and very touched. 

Lets hope she gets hooked up with the right doctor who can get her on the road to recovery!


----------



## rback33

Brent, 
Accreditation is a VERY important part of any health care facility in a similar way it is to a university. It affects funding, referrals and is a reflection of the abilities of the staff and quality of care.  I have no doubt that the people in Boston are banging heads together and taking Methodist to task. My thoughts and prayers are still with you.


----------



## pirate_girl

working woman said:


> Hey all, just wanted to give you an update to let you know that the gift card we got for Brent and Mel was delivered today in person. I must say for the first time since I've known Brent he was speechless! and very touched.
> 
> *Lets hope she gets hooked up with the right doctor who can get her on the road to recovery!*



AMEN!


----------



## Doc

Judy Judy Judy you are indeed AWESOME!!!!!!
Thanks so much for your help in getting the card to Brent.  I'm not sure how we would have done it without you.  
To all who donated to the cause, THANKS so much.  We all feel for Brent and Mel and want to help in whatever little way we can, and together we came up with a card Brent can use for gas in the amount of $465.       That should get him to Boston and maybe even help with part of the trip back.    I feel good that we are able to help like this when one of our Forums Forums family is having a tough time and can use a little hand.  Thank you all for being who you are.  You are all folks that I am proud to call friends.


----------



## Dargo

*Wow!  You guys are incredible!!!*

As Judy said, I was speechless.  Melanie has not been awake to give her the gift yet.  When I got home I also got some of the first good news from this 'getting the records' ordeal.  Apparently Methodist did not want Children's Hospital of Boston and Boston General asking for formal papers from Methodist.

I received a very cordial phone call from a very, very apologetic lady about an hour ago and she immediately faxed me well over 100 pages of medical records, which I immediately scanned and sent to the Boston based physicians.  So, after weeks of waiting, all it took was an official inquiry from the brass at Boston's hospitals to Methodist to get the records on their way!  Rback33 must be right about accreditation being rather important. 

Now the nail biting starts.  I'm told that it will likely take most of this week for the appropriate physicians in Boston to review the notes, and perhaps call for additional records, before I hear what the consensus course of action will be.  I can't hardly stand it thinking that she may have to have another open brain surgery.  It nearly killed me watching her endure the last one.  I'm told they have a 9 tesla MRI machine out there.  Maybe they can use that monster of a machine and see what they need to see without taking her head apart again!  Still, being the trooper she is, Melanie says she's ready for 'whatever' it takes to get her better.  Man, she's tough!!

I can't wait until she wakes up and I show her what you guys and gals have done for her.  Between knowing so many people care, are so generous with their time, money and prayers, and her records are finally coming in, I hope it brightens her mood.  Obviously, her mood has been down; which has brought my mood really down.  I'm ready for some good news.  I've slowly worked on our coach to make it "all weather" ready.  I only have about another hour or so of work to finish for it to be ready to run in temps down to -10 or so.

Boston doctors want to try to see if the procedures can be done in St. Louis (much closer to us) if possible with them "quarterbacking" the case.  I'm okay with that or I'm okay with living in our coach for a month or however long it takes in a parking lot in Boston.  All I know is that it seems the log jam is finally starting to clear.

Thank you again to everyone who has even thought well wishes for Melanie.  With any luck she can get past this phase in her life and she will be a pediatric surgeon in another 10 years or so as planned.


----------



## pirate_girl

What a relief Brent.
I am glad that the records and all necessary info are finally making a move.
I am glad this is all going to be resolved soon.
I am THRILLED to think that Melanie will soon be out of pain and back on her feet again.
Don't worry so much about what may or may not happen once she gets to Boston.

You've had an awful lot of people praying for you all.
It's all going to be ok.


----------



## muleman RIP

Hang in there Brent! The docs will give her records a good review and advise the best course of action. Take care of her and the rest of your family and other things will work out. Glad to hear you have the coach ready to roll if needed. That is one less worry to deal with. Remember to watch out for your knee through all this.  that drive will be tough with a gimped up leg. Good luck and prayers for all.


----------



## Doc

That is good news Brent.  Everything is starting to flow.  The damn has busted.  Prayers for Mel and the doctors in Boston that they make the right moves.


----------



## RedRocker

Any news?


----------



## Melensdad

RedRocker said:


> Any news?



I have none and I'm always afraid to ask, but I, like you, am waiting for the next update.


----------



## Dargo

Thanks all.  Right now we are in the "sit and wait" mode while the best neurologists available are all reading over Melanie's complete history, medical notes, scans, blood test results, spinal fluid test results etc. etc.  To be perfectly honest, we were really sort of hoping to have heard something yesterday but obviously didn't.

It's really hard for me to keep patiently waiting.  Well...let's just say waiting.  My patience is almost all gone due to some less than honest physicians and hospitals.  However, I would be completely remiss if I didn't note that there have also been some amazingly wonderful, caring physicians who have seen Melanie.  It's a difficult situation and I cannot throw out any blanket statement about how horrible everything has been since there have been a few who were anything but horrible.  Still, overall, I will most certainly go on record saying that I am much less than even a little impressed with Methodist Hospital of Indianapolis.

I'm now trying to figure out what to do with some of the blatant bullshit bills that have been just thrown into the pile from physicians wanting to grab a hand full of money from us as we pass by their area.  We've received even more bills from this Dr. Roos, who spent much less than 1/2 an hour (closer to 10 minutes) with Melanie and had an intern write up a totally bogus and incorrect, dangerously so, "Final Report" on Melanie.  If my numbers are correct, so far this Dr. Roos is topping $7000.00 for a 10 minute visit and having an intern write up a "Final Report" that very well could be for the wrong patient; it's that far off.

Am I wrong in thinking that, once I get Melanie in for proper care, that it's my civic duty to go after corrupt physicians like this Dr. Roos?  The arrogance, incompetence and over-billing could honestly prove fatal in some instance.  Or, is it just my emotions making me think that such a person shouldn't be practicing medicine?


----------



## JackieBlue

After seeing how my Dad was treated in the hospital prior to his diagnosis, after his diagnosis and before his death, I have little faith in a lot of doctors and hospitals.  So no, you are not wrong in thinking the way you are.

My continued thoughts and prayers are with Melanie and you and your family.


----------



## RedRocker

Go for it! Hang his sorry ass!


----------



## Melensdad

Dargo said:


> Am I wrong in thinking that, once I get Melanie in for proper care, that it's my civic duty to go after corrupt physicians like this Dr. Roos?  The arrogance, incompetence and over-billing could honestly prove fatal in some instance.  Or, is it just my emotions making me think that such a person shouldn't be practicing medicine?



Wait.  Don't even think about this stuff yet.  After Mel is back on her feet and smiling then you can think about this.  Right now your mind needs to be clear and focused on her.


----------



## muleman RIP

I have to agree with focusing on Mel's care right now. Most states have a 2 or 3 year statute of limitations on malpractice. Plenty of time for that after she is fixed up. Good luck to all.


----------



## Trakternut

Ya know what, Dargo?  I would mail them the bills back requesting them be shoved up somebody's backside because if they expect you to pay them, you will forward them, along with a lengthy detailed report of the physicians' and hospital's (in)activities in treating your daughter to the State Medical Board.  I sort of guess that those bills will disappear. 
  These latest posts caught me at a very bad time because my wife's P.A. is going to get an earful if her sinus infections are flaring up *AGAIN!*
  There will be some medical ass-kicking going on in the State of North Dakota, shortly, as well.
   No, Dargo you are not wrong! These frauds need to be taken down to burger flippers at McDonald's 
   GO GET 'EM!
   And let us watch, ok?


----------



## pirate_girl

Melensdad said:


> Wait.  Don't even think about this stuff yet.  After Mel is back on her feet and smiling then you can think about this.  Right now your mind needs to be clear and focused on her.


What he said..


----------



## Cowboy

Trakternut said:


> Ya know what, Dargo? I would mail them the bills back requesting them be shoved up somebody's backside because if they expect you to pay them, you will forward them, along with a lengthy detailed report of the physicians' and hospital's (in)activities in treating your daughter to the State Medical Board. I sort of guess that those bills will disappear.
> These latest posts caught me at a very bad time because my wife's P.A. is going to get an earful if her sinus infections are flaring up *AGAIN!*
> There will be some medical ass-kicking going on in the State of North Dakota, shortly, as well.
> No, Dargo you are not wrong! These frauds need to be taken down to burger flippers at McDonald's
> GO GET 'EM!
> And let us watch, ok?


 

The timing may not be the best Dargo, but you are doing everything posable right now . I say go after them now While everything is still fresh in your minds . Sometimes waiting is not such a good idea & it may be good therapy for yourself as well IMHO . Continued thoughts and prayers


----------



## Danang Sailor

I feel you should put your well-deserved anger on hold and concentrate on getting Mel the proper care and treatment.  What you should be doing right now regarding the probable malpractice/malfeasance is documenting absolutely *everything* so that nothing falls through the cracks later.

But, spend most of your energy doing whatever you can for Mel; she is the most important thing in all this and she needs you now like she never has before.  Just be there for her, and remember my motto:

"Non-carborundum Illegitimai!!"  ("Don't let the Bastards Wear You Down!!")


----------



## pirate_girl

Danang Sailor said:


> "Non-carborundum Illegitimai!!"  ("Don't let the Bastards Wear You Down!!")



Again, what Popeye said.


----------



## Galvatron

I feel very worried for Mel and the treatment/care that is at hand....i do hope my concerns are just me a Father over reacting.

My prayers and good wishes are ongoing for you Brent....i do pray solutions are found real soon....Mel deserves the best treatment and care possible....and i know you Brent are doing your damn hardest and the system makes my blood boil.

Love and best wishes.


----------



## Dargo

I'm going nuts...


----------



## pirate_girl

Dargo said:


> I'm going nuts...



Any Father would be Brent.
Hang in there.


----------



## loboloco

Hang in there, Brent.  A lot on you right now.  Our prayers and thoughts are with you.


----------



## EastTexFrank

My thoughts and prayers have never left you and Mel throughout this whole ordeal.


----------



## Dargo

Although it's not a lot of progress, mostly mental attitude, I thought I'd post an update.  With Melanie's drive to succeed and win in everything and her type A personality (almost an alpha male ), she now has moved past the pissed off stage with the physicians and is doing her own to heal.

After basically laying in bed or on the couch since August, and having major brain surgery in between, she hasn't gotten any exercise.  She's always been a competitive soccer player and very active.  She said "heck with it!", and started walking on my treadmill last weekend.  It was hard watching someone who could run for 60 minutes straight have a hard time even walking for 5 minutes, especially with the significant weight gain from the steroids and no exercise.

Last night she *jogged* 2 miles on my treadmill, spent 15 minutes on the elliptical machine and then walked 1 more mile and finished it off jogging another mile!! 

I have a feeling for some reason that this is a turning point of some sort in her illness.  Her physicians said she could walk a bit and even try to jog but jogging would be painful to her head and she MUST take every precaution to not fall and hit her head.  They said she'd know how far she could push herself.  Apparently she's determined to push herself rather hard!

We are still waiting for the neurologist team in Boston to tell us what they feel the next move will be.  They said that a treadmill takes some of the 'shock' out of jogging because it flexes but they were still shocked at how quickly she is making progress.  Oh yeah, the two mile jog was at full incline on the treadmill; I forgot to mention that.

Mental attitude from a 2 to an 8 right now.


----------



## Cowboy

Thats great news, thanks for the update Dargo & Kudo's to your extremely strong little girl . Continued thoughts & Prayers for Your family .


----------



## AAUTOFAB1

Just goes to show how hard it is to suppress the human spirit..i'm so happy to hear her up and moving aroundthanks for the update my thoughts and prayers continue.


----------



## Galvatron

That's positive news Brent....and knowing this is going to be a battle that wont be won over night i praise Mel for finding the strength to try her damn hardest to get mentally and physically in the best shape possible for the road ahead....it will pay off greatly.

Go Mel Go you are truly inspiring......Prayers and best wishes on going.


----------



## Melensdad

Galvatron said:


> . . .Go Mel Go you are truly inspiring......Prayers and best wishes. . .



Says it all right there.  She really is an inspiring young lady who is pushing against an illness that none of us can even imagine dealing with.


----------



## XeVfTEUtaAqJHTqq

Attitude plays a huge role in these things.  Glad to hear there is something positive happening.


----------



## Doc

PBinWA said:


> Attitude plays a huge role in these things.  Glad to hear there is something positive happening.


   Great news Brent.  Go get em Mel.  For one so young and typically so active I'm sure it feels fantastic to be back up and at it again.


----------



## Dargo

Wow, talk about a determined young woman; she's having her brother help her read (she can do reasonably well if she covers up her left eye) so she can enroll back at IU next year.  She said even if she has to have another brain surgery, nothing is going to stop her from going back to school next year!  She said she'd learn braille if she had to this summer, but she IS going back to school next year.

With her credits and doing summer school in the next 2 summers, she can still graduate with her regular class.  She's trying to find housing closer to where her classes will be right now.  If you can will yourself healthy, I'll be damned if she isn't going to give it her best shot!  The MRI and physician's reports don't look that great but she said "What do they know?  They screwed up my brain surgery already and have misdiagnosed me several times.  Why trust them now?".

Then she got up and promptly walked into a wall.   All I heard was "Stupid wall" as she walked on towards the treadmill.  I love it; she's on a mission now.  Thank each one of you so much!  She knows she isn't near being cured, but she is now determined that she *will* be cured one way or another.  There's still quite a battle ahead, but she seems to be training for the fight right now.


----------



## RedRocker




----------



## Av8r3400

Go, Mel!  We're all supporting you and praying for your recovery.


----------



## JackieBlue

That's wonderful news!  It gave me goosebumps reading it.  I wish her continued progress.


----------



## thcri RIP

That sounds great Brent.  With her determination she will win this yet.


----------



## baldy347

Very encouraging!!I think her attitude will be the deciding factor in her recovery-with the help of GOOD Doctors progress should be much quicker.
  The very highest hopes and wishes for Mel and your entire Family.
  take care,
    wayne


----------



## BigAl RIP

Thats great ! She has the right frame of mind . God Bless Her and you , my friend .


----------



## muleman RIP

Glad to hear of her getting physically active again. The moving around will help all her systems function better. Hope you soon hear from the Docs what they recommend.


----------



## bczoom

_If I may use a slang term_ 

*"YOU GO GIRL!!!"*


----------



## EastTexFrank

Her attitude will be a great help.


----------



## Danang Sailor

People *can* will themselves into a healthy state; all it takes is the decision that it *will work!!*  Mel sounds as if she believes, which is 90%+ of what is needed.  The odds seem to have turned in her favor. 

Be sure she knows how proud of her her entire "FF family" is!!


----------



## lilnixon

How is Mel doing?  She is such a strong young lady.  Hugs Kisses and prayers to all.


----------



## Melensdad

lilnixon said:


> How is Mel doing?



I'm glad you asked because I'm always afraid to do so.


----------



## pirate_girl

Melensdad said:


> I'm glad you asked because I'm always afraid to do so.


I'm not afraid to ask.
Brent, how is Melanie doing?


----------



## Dargo

Thanks all.  Well, I suppose a conditional 'better' and a very concerning 'we don't know'.  Yesterday I got a phone call from "Children's Hospital Boston", neurology department.  It seems that after 6 weeks of trying to get slides and/or a tissue sample from the surgery, Methodist Hospital of Indy won't respond. 

I've been warned that it will only tie up things, but at this time I feel I really have no other option than retain a very large law firm and have them take over.  I couldn't get the samples or medical records sent to Boston, so I asked them if they would try.  They got the records, but the records are only what the physicians in Indy did and what _they_ thought.  Without the slides or tissue sample taken in the biopsy, it's impossible for the physicians in Boston to make any determination of what is the underlying factor (not the symptoms) and how to proceed.

As many know, I've been suspicious of Methodist and the biopsy from the start since the sample was harvested on 12/22/10 and nobody looked at it until 1/8/11.  What happened in the interim?  Where was the tissue sample?  Many questions; no answers.  That, and now I'm starting to deal with the hundreds of medical bills that are "problem" bills.  You know the kind; where I reached the maximum family out of pocket, I was in the network, but the physician is threatening to turn me in to a collection agency if I don't pay.  One physician, a Dr. Roos, (I may have mentioned her before) is the worst.  She is charging several thousand dollars for a "Final Report" that is completely wrong and was done by a student.  

Roos spent far less than 1/2 an hour with Melanie and put nothing into the report.  I told her office last week that if they turn this bogus bill over to a collection agency, not only would I never pay, but I would most certainly contact the AMA, the administrators of Methodist, the president of Methodist and any other department or chairperson pertinent to the situation and expose her less than ethical practice and extortion methods.

I've already surpassed my family maximum out of pocket this year!  I'm certainly feeling the pain of medical bills.  However, I do feel physicians should be paid a fair and reasonable amount for their services.  I have no intention of stiffing anyone.  However, corrupt and immoral physicians like this Dr. Roos need to be culled from the system.  I do not respond well to threats or extortion.

Anyway, Melanie has cabin fever so bad (since last August), she went with my wife and Madison for a 3 day soccer tournament in TN this weekend.  I feel lost not seeing her to check on her.  I'm glad to see her want to get out some.  Still, she is VERY concerned that Methodist has lost her tissue sample and another surgery may be required.  If this is the situation, this will be such a large legal issue and so many protocol and other violations at Methodist Hospital in Indy, I'm sure it will be in the news.  I honestly hope not but not nearly as much as Mel hopes this is not the case.


----------



## Doc

Thanks for the update Brent.
How is Mel's sight?  Has it returned since the surgery?    
Good luck with the biopsy data.  I don't understand why any hospital would be so uncooperative.


----------



## JackieBlue

I'm glad Mel is feeling good enough to travel.  That's a great sign.  I'm so sorry for your other issues with the damn hospitals.  Maybe it's time to get a lawyer to handle these situations for you.


----------



## Dargo

Doc said:


> Thanks for the update Brent.
> How is Mel's sight?  Has it returned since the surgery?
> Good luck with the biopsy data.  I don't understand why any hospital would be so uncooperative.



Well.....it's not nearly as good as she will try to tell you (but I love her positive attitude).  Still, she has convinced me that she can see well enough out of her right eye that I let her enroll for school next year and apply for housing.  I mean, seriously, could I tell her "no" after all she's been through?

One telltale sign that her sight isn't that great is that, as much as she loves her new car she earned, she won't even consider even moving it out of the barn.  She's not about to destroy something she worked 12 years to earn.  She is also quite pissed at the time it's taking for the physicians to get moving.  She's a very smart girl and likely knows more about what is ahead of her getting healthy than I do.


----------



## Dargo

Well, fingers crossed, I think I have some good news.  Melanie told me that she can see fine out of both eyes right now!!   She even asked if she could drive!  Needless to say, we are very excited.

However (here comes the cold water), she has worse pain in her head and we have gotten nowhere with getting any pathology or a specimen of tissue from her brain surgery at Methodist Hospital in Indy.  It's been almost a month now that Boston has been asking for this info and a week since my main contact said to give him a week before beginning litigation.  No response from him means that he has not received anything from them.  With this much pressure put on them from a much higher rated and superior hospital and them unable to produce the info or even a slice of the tissue is a very, very bad omen.

I haven't told Melanie this, but I've been warned that her vision coming back is possibly not permanent and, without a sample or workup of the tissue from her brain tumor, we still have no idea what we are dealing with.  In one way, I'm so happy I can't stand it but on the other hand, I'm so scared this 'progress' could be reversed literally overnight certainly scares me.

Right now I'm just thinking positive and going through the 3 inch tall stack of bogus billings I have from various physicians and places she has never visited.  I've been advised to turn the tables on the clearly crooked physicians and sue them _before_ they can turn a bogus and incorrect bill over to a collection agency; who doesn't care if it's really due or not.

So, for right now, I am trying to opt to be happy and celebrate her being able to see (in spite of her being in severe pain)!


----------



## Big Dog

Praying for continued good news!


----------



## pirate_girl

Thanks for the update Brent.
Good luck with the billings, but more importantly.. it's good to hear Melanie has sight.


----------



## Doc

Sure glad to hear she has her sight back and is wanting to drive, scary as that seems.
I sure don't understand the hold up with samples from the Methodist hospital.  For being in the business of wanting to fix people and help with their prognosis these folks appear to do just the opposite for no reason I can fathom.  Good luck with a breakthrough there and prayers for Mel continue.


----------



## jimbo

My turn to ask.  How are things going?


----------



## Galvatron

jimbo said:


> My turn to ask.  How are things going?



A much needed nudge on the thread


----------



## Dargo

Oh, sorry all.  After almost three months of fighting with Methodist Hospital to get tissue samples sent to much higher regarded neurologists and neurosurgeons, all to try to get some diagnosis, Methodist *finally* located the tissue samples from Melanie's brain surgery back in December (at least I hope they are from Melanie!) and sent them to the Boston physicians last Friday.  Now I'm just waiting to hear from the physicians in Boston.

I could write an entire book on all of the administrative incompetence, physician arrogance, physician incompetence and overall inexcusable experience we've received from Methodist Hospital of Indianapolis.  It would take pages to describe the incorrect billing, flat wrong billing, double, triple billing for the same procedure by the same physician, 4 or 5 'consults' at about $3000 each (that we didn't ask for and bore no results) etc., etc.  At this point my sole focus is to get Melanie healthy and get a diagnosis.  After 4 months, that sounds rather absurd; to still be trying to get information and some sort of diagnosis, or even an "I don't know" diagnosis.

I have several very educated and prominent academicians and physicians who tell me that it really should be my moral duty to pursue the problems at Methodist after Melanie is taken care of.  I've been told that over 99% of the people would have just given up after all these months and dead ends with Methodist Hospital of Indy.  Those here know me know I'm not the type to let something like that drop; especially when it very well could be life threatening to my daughter!!  I don't want to say too much here just in case this does become a super huge issue for Methodist and they want copies of this entire thread (at least 2 or 3 guest visitors who have read this thread have been attorneys and they said all is well here).  As I said, I just want my baby girl well.  Sure, she's nineteen now, but she will always be my baby girl and daddy's girl.  If it saves just one other patient from having to go through the hell we've been through, I feel it's my obligation to then turn the attorneys and AMA and any other medical accreditation group on them.

Hopefully I'll know more later this week.  I'm not about to push the fantastic physicians in Boston.  They have gone waaaaaay above and beyond the call of duty to try to help my daughter and are embarrassed by the 'bad eggs' who give the stereotype of the physician with the awful bedside manner along with being a case in study of how NOT to run a billing department.  Again, a sincere thank you for asking!  Hopefully I'll start getting information on a more timely basis.  Oh, I am not plugging another site, but if anyone ever drops by there, please drop IslandTractor a PM and tell him how much I appreciate the dozens and dozens of hours he has put into helping Melanie while refusing to accept a dime from me.  His first name is Ed.  We need more physicians like him!  He has been unbelievable in making himself available and pushing this entire matter through.  Without any doubt, I'd still be stuck and lining up attorneys right now without him.  I cannot speak highly enough about him.


----------



## rback33

Thanks so much for the update Brent. It's nice to hear that things are continuing to move in the right direction. You touched on one thing I had wondered about in regards to your postings and lawyers. I am glad someone has reviewed it and no harm has been done here from a legal sense. Best of luck to you and Mel. I look forward to more positive reports.


----------



## jimbo

Thanks for the update.  I think we are all with you on this problem.


----------



## Doc

Ditto what these guys said.  Thanks Brent.  
I'm so happy to hear things are finally moving along.  Way to stick with it.


----------



## jimbo

Doc said:


> Ditto what these guys said.  Thanks Brent.
> I'm so happy to hear things are finally moving along.  Way to stick with it.


Agreed, and Brent, please keep us posted.  Believe it or not, there are a lot of us here who really, really, care.


----------



## loboloco

Brent, glad to hear things are finally moving.  You're right, something is rotten in Denmark, it shouldn't have taken so long.  Give her our best wishes from down south and tel her we are all rooting for her.


----------



## AAUTOFAB1

All the best to you and yours,thanks for the update


----------



## ki0ho

Thanks much Brent...I to was wondering and wanted to ask...but being a bit thick sometimes....I was consernd that if I ask on the board and something  not good had happened I would cause undue pain and did not want to do that.....thanks again for the up-date and we are praying for your whole family........if something like that was put onto one of our girls  I would be tempted to go into confrences with a pick-ax handle in my hand!!!!

God be with ya and yours............Jerry


----------



## Danang Sailor

What they all said!!   Keep us all informed and know that you and Mel are inn the thoughts and prayers of a lot of people.


----------



## Big Dog

Dargo said:


> Oh, sorry all.  After almost three months of fighting with Methodist Hospital to get tissue samples sent to much higher regarded neurologists and neurosurgeons, all to try to get some diagnosis, Methodist *finally* located the tissue samples from Melanie's brain surgery back in December (at least I hope they are from Melanie!) and sent them to the Boston physicians last Friday.  Now I'm just waiting to hear from the physicians in Boston.
> 
> I could write an entire book on all of the administrative incompetence, physician arrogance, physician incompetence and overall inexcusable experience we've received from Methodist Hospital of Indianapolis.  It would take pages to describe the incorrect billing, flat wrong billing, double, triple billing for the same procedure by the same physician, 4 or 5 'consults' at about $3000 each (that we didn't ask for and bore no results) etc., etc.  At this point my sole focus is to get Melanie healthy and get a diagnosis.  After 4 months, that sounds rather absurd; to still be trying to get information and some sort of diagnosis, or even an "I don't know" diagnosis.
> 
> I have several very educated and prominent academicians and physicians who tell me that it really should be my moral duty to pursue the problems at Methodist after Melanie is taken care of.  I've been told that over 99% of the people would have just given up after all these months and dead ends with Methodist Hospital of Indy.  Those here know me know I'm not the type to let something like that drop; especially when it very well could be life threatening to my daughter!!  I don't want to say too much here just in case this does become a super huge issue for Methodist and they want copies of this entire thread (at least 2 or 3 guest visitors who have read this thread have been attorneys and they said all is well here).  As I said, I just want my baby girl well.  Sure, she's nineteen now, but she will always be my baby girl and daddy's girl.  If it saves just one other patient from having to go through the hell we've been through, I feel it's my obligation to then turn the attorneys and AMA and any other medical accreditation group on them.
> 
> Hopefully I'll know more later this week.  I'm not about to push the fantastic physicians in Boston.  They have gone waaaaaay above and beyond the call of duty to try to help my daughter and are embarrassed by the 'bad eggs' who give the stereotype of the physician with the awful bedside manner along with being a case in study of how NOT to run a billing department.  Again, a sincere thank you for asking!  Hopefully I'll start getting information on a more timely basis.  Oh, I am not plugging another site, but if anyone ever drops by there, please drop IslandTractor a PM and tell him how much I appreciate the dozens and dozens of hours he has put into helping Melanie while refusing to accept a dime from me.  His first name is Ed.  We need more physicians like him!  He has been unbelievable in making himself available and pushing this entire matter through.  Without any doubt, I'd still be stuck and lining up attorneys right now without him.  I cannot speak highly enough about him.



Great news! .................. without stealing the thread, I can attest you did and are doing the right thing! Without a long description, my mother is alive today because my brother and I questioned her doctors, removed her from their care, and took her to Hillman Cancer Research Center and Shadyside Hospital. The difference between the original care and her current care is just amazing!

The sad thing is IMO it was all about money.... They where clearly upset when I told them we're taking her out of their hospital and then the lies they told when they had to transfer info to Shadyside and Hillman, pretty disgusting. Please learn for Brett's thread .......... do your research when you or a family member needs care!!!


----------



## pirate_girl

Rock on Brent.
It's very good to hear that you've finally got some GREAT support and things are going in the right direction.
I'd been wondering what's going on concerning Melanie and your family.


----------



## baldy347

What They all said! i certainly could not say it any better.
 wayne


----------



## JackieBlue

Continued prayers for Mel and your family.


----------



## Dargo

I know I've been quiet on this front, but things have been anything but quiet.  It looks like there is about a 90% chance that I'll be leaving this weekend for the long talked about trip to see physicians in Boston.  Not that I've had time to be on much, but I'll only have my phone with me on the trip.  It looks like it will be just me and Melanie making the trip.  When asked when we will get back, all I can say is "When we can, after all has been done by the physicians there."  Oh, I wanted to say "thank you all" again for the wonderful gift card.  It has not been touched yet, but I'm sure we will get some use out of it this weekend and in the next week or two.  Wow, gas has gone up over a dollar a gallon since this started.  Wonderful.  I'm excited to finally get the ball moving, but I'm also extremely apprehensive.  It's been so long fighting red tape and incompetency, I'm so nervous right now.  Well, doing nothing is clearly not an option.  Cheers to good news and an excellent prognosis that I hope to get for her.

Hey, maybe this is a good omen; while I am typing this, this song just came on the radio in the background [ame="http://www.youtube.com/watch?v=UDRLZFgEoGw"]Boston[/ame]


----------



## CityGirl

Godspeed


----------



## Doc

CityGirl said:


> Godspeed


Exactly ..and lots of good thoughts and prayers will be following you guys on this journey.    I can sure understand you being nervous ...heck I'm nervous for you.


----------



## JackieBlue

My thoughts and prayers will be with you and Mel.  Stay strong.


----------



## loboloco

Be safe, and I wish Melanie all the luck in the world.


----------



## pirate_girl

I'll be praying for you all Brent.


----------



## muleman RIP

Hope you have a safe trip and good results.


----------



## AAUTOFAB1

Best wishes,hope all goes well.


----------



## Dargo

Thanks, very sincerely, to all.  Because the high tesla MRI scans are expensive, we had a slight delay; but we got past it (I'll spare you the details of how).  Anyway, we start at 6:30 am tomorrow with a 3 tesla MRI scan at a local hospital (one hospital got one in the last 9 months!).  That will be sent to Boston ahead of us and give the neurologists and neurosurgeons time to review the scan before we get there, saving us a day in Boston.

After they confirm they have a 'good' scan in Boston I will get appointment times and be able to make travel plans for this weekend and hotel arrangements.  It goes without saying that we are hoping for the best.  As my understanding is, the 'best' would be that it's just an inflamed and swollen (I forgot the medical jargon, sorry) area that can be treated with specific and targeted anti-inflammatory for a specific time period.  From there, well, it just starts getting more complicated and worse.  I'm going to stick with the inflammation and hope these super smart doctors know what is causing it and, therefore, know what to prescribe to stop it without any further invasive actions.

Again, sorry I'm not been "me" for the last 6 months or so (maybe that makes some happy ).  This is by far the most progress we've made in getting some resolution to her situation.  I know it sounds like a broken record, but I would have never have been able to get past the roadblocks and red tape if it weren't for "IslandTractor", Ed.  I believe in giving credit where credit is due and he has gone far, far beyond the call of duty and has helped Melanie get lined up to see the proper people when I know for a fact I was shut down and basically told to take her home and let her lay on the couch in pain.  I'm a grumpy hard ass man, but it brings tears to my eyes when I think about all the kindness shown by everyone here, the unbelievable gifts that will help so much and the unselfish generosity of Ed using his prestige to get us past the roadblocks.  I am so thankful for true friends like you guys!  I mean that from the bottom of my heart.


----------



## muleman RIP

Does this mean a year from now we can pull your grumpy card??? Just focus on your daughter and the "stuff" will work out.


----------



## baldy347

Wishing you and Mel,and all your Family the Very Best. my Hopes and Prayers are with you all the way.
  wayne


----------



## RedRocker

I have to say that I've seen a lot more kindness on the interweb than the other way around. There are a lot of good folks out there and this medium lets them find each other. Kudos to Ed for stepping up, prayers from Tejas for you & Melanie Dargo.


----------



## Dargo

Wow!  Since Mel can't fly, I'm checking Mapquest and my Garmin GPS for the best route to Boston.  I had no idea it was so freaking far away!  Who moved it 1100 miles from my house?!  If her first appt. is at noon on Monday, I'm trying to figure how early we need to hit the road tomorrow morning.  I'm planning on driving as far as I reasonably can tomorrow, stopping at a motel for a quick stop, and then driving on in to the hospital in Boston Monday.  It looks like I need to get to the East side of Albany, NY by the end of tomorrow.


----------



## muleman RIP

Are you going to run across I-80 or I-86? I-80 to I-81 and then north to Binghamton where you pick up I-88 is not a bad run. The flooding is slowly going down and it never closed the roads over there.


----------



## Dargo

Quick note from Boston. Unfortunately not good. Tumor has come back about double in size. Causing Mel considerable pain and some vision issues are returning. She will have to endure another brain surgery relatively soon. Wish I had better news. Mel is a real trooper. She seems to be taking news better than me.

I did want to thank all for providing a very ill girl a smile today. I explained that the generous debit card was all for her use. She bought a few shirts and a "Boston" jacket. Thanks again. We have a lot for her tomorrow.


----------



## AAUTOFAB1

One day at a time,she is very strong and i will keep her in my prayers.


----------



## RedRocker

AAUTOFAB1 said:


> One day at a time,she is very strong and i will keep her in my prayers.


----------



## Trakternut

X2


----------



## JackieBlue

As always, Mel will be in my prayers.


----------



## BigAl RIP

Same here . Me and my wife talk and think about her often . You have our prayers  .


----------



## EastTexFrank

RedRocker said:


> prayers from Tejas for you & Melanie Dargo.



What he said.


----------



## pirate_girl

Dargo said:


> Quick note from Boston. Unfortunately not good. Tumor has come back about double in size. Causing Mel considerable pain and some vision issues are returning. She will have to endure another brain surgery relatively soon. Wish I had better news. Mel is a real trooper. She seems to be taking news better than me.
> 
> I did want to thank all for providing a very ill girl a smile today. I explained that the generous debit card was all for her use. She bought a few shirts and a "Boston" jacket. Thanks again. We have a lot for her tomorrow.


No! 
Well, I mean that's not the news I am sure a lot of us wanted to hear, Brent.. but as always..the prayers are still coming from all of us here.. your extended forum family.
She is a trooper.
Best wishes from here.. keep us updated every step of the way (when you can).


----------



## muleman RIP

Hang in there Brent! Mel is young and strong and has a good mental outlook for all she has been through. Prayers for all as you tackle the next steps.


----------



## Dargo

Thanks again. We are now meeting w neurosurgeons and discussing surgery options. Mel is taking this far better than I am.


----------



## bczoom

Hang in there Brent.  We're all sending prayers and best wishes.


----------



## Doc

Dargo said:


> Thanks again. We are now meeting w neurosurgeons and discussing surgery options. Mel is taking this far better than I am.


The strength of our younger generation amazes me.  
Sorry to hear the news that the tumor is back and bigger.  
More prayers on the way as you fight your way through this.  I'm glad we were able to bring a smile to Mel's face.  That means a lot at a time like this.
Best wishes Brent.  Hang in there buddy!


----------



## baldy347

What they said, i can't say it any better.Best of Hope, Wishes and Prayers for You and Yours.
  wayne


----------



## working woman

countinued prayers here. For Mel, you and your family and well as the doctors working on her


----------



## XeVfTEUtaAqJHTqq

Best wishes Brent!  I hope this is all in the past very soon.


----------



## Galvatron

I am so sorry Brent that the situation as taken a bad twist....but remember things usually in life get worse before getting better....stay strong  Brent your one outstanding man that should hold his head proud,Mel you melt my heart with your positive approach  and strength for a bright future.


If there is anything from England i can get and send to make anyone smile just ask and it will be my pleasure to assist....Go get em Mel you can do this!!!!!


Thoughts and prayers ongoing.


----------



## Dargo

Well, we just got hit with a bit of bad news today.  After review, Mel needs to have brain surgery again pretty well as soon as reasonably possible.  That means it's no life flight and emergency surgery, but it also means there is no waiting a month or two.  I'm pretty crushed to say the least.  Mel is the trooper.  All she said is "let's do it".  I think she's tired of being in constant pain.

I again have to thank Ed (IslandTractor).  He has her setup with the best neurosurgeon for the surgery.  Obviously, this will require us to uproot and be in Boston for....well, for a while.  Details are still getting worked out, but it's possible that she will have surgery on June 10th in Boston.  I'm not exactly sure at which hospital, but the surgeon will be Dr. Ed Smith Dr. Ed Smith.  I think the surgery will be at Children's Hospital Boston, but I am not sure.

I cannot express my gratitude for all the support I've received here.  I'm kinda in shock thinking 'here we go again' right now.  Sorry to be so brief.


----------



## muleman RIP

Hang tough Brent and know that many are behind you and Mel in this struggle. Prayers for a good surgery and strength for all in the weeks ahead.


----------



## bczoom

We're all with you here Brent & Mel.  Whatever it takes to make her better.

If there is anything you do need, please holler.  Also, many of us also live close to your travel route so if you need anything in your travels, I'm sure we can hook you up (and literally, if you have your RV with you).


----------



## tommu56

Bret we are cheering for you guys, I know it will be along road to hoe but we will be cheering you both on!

tom


----------



## JackieBlue

Brent, I can't even begin to imagine what you all are going through, especially Mel.  Just know that you are all in our thoughts and prayers.  Stay strong but when you need to let it out you can always come here.


----------



## jpr62902

Hang tough, Brent.  Just know that this is another step in her full recovery.


----------



## Doc

muleman said:


> Hang tough Brent and know that many are behind you and Mel in this struggle. Prayers for a good surgery and strength for all in the weeks ahead.


+1


----------



## Dargo

I thought I'd give an update while Mel is sleeping.  It's been hell week.  Due to their piss poor customer service and attitude, I predicted Northworst Airlines would go bankrupt or be bought for pennies on the dollar.  Mark my words; American Airlines are next.  I'll do my absolute best to refrain from a long rant, but it will be a cold day in hell before I ever fly American again!  Melanie was given a pain injection as we left the hospital in Boston that would have lasted for about an hour past the time we would be at our home.  If it were up to American Airlines, I'd be still driving somewhere trying to get home.  After 12 hours of delays, they dumped us in Chicago and told me to "read the fine print on the back of my ticket" and they are under no obligation to get me to my final destination point even though I paid full fare for 3 of us.  Maybe later in the 'rant' section, but even a TSA agent told an American supervisor that they were going to slap the shit out of them and arrest them if they yelled at my daughter for crying while curled up in a ball in pain.

Anyway, literally as the surgeon was beginning to make the first incision in the OR, the radiologist monitoring Mel in real time 3D imaging said "Stop!", and asked the surgeon to come look at what he noticed.  What he had noticed was that the 'tumor', leision, growth (nobody knew what to call it) had doubled in size since OR prepping.  Part of Mel's surgery involved a rather new procedure where most of the spinal fluid is drained from the patient and, as such, greatly shrinks everything inside the skull around the brain.  The only reason the 'thing' would begin 'growing' fast would be due to the decreased outside pressure being exerted on it.  Already in the room with their huge 9 tesla MRI machine, they immediately did a contrast MRI and called in the head of Vascular Surgery, who immediately performed an angiography with a radio-opaque contrast agent.

What they discovered was a arteriovenous fistula that is leaking.  Since I did NOT graduate from Harvard Medical School, let alone top in my class and head up cranial vascular surgery there, I will have to cheat and use bits of notes I have and wikipedia.  Per Wikipedia, "It is the only anatomic location in the body in which an artery travels completely through a venous structure. If the internal carotid artery ruptures within the cavernous sinus, an arteriovenous fistula is created (more specifically, a carotid-cavernous fistula). *Lesions affecting the cavernous sinus may affect isolated nerves or all the nerves traversing through it*."  Top surgeons in the world say they would not operate in this area unless certain death would occur otherwise.  Not good.

However, the team of surgeons spoke with us and said that one physician at Harvard has repaired this problem from the inside of the vein and the patients have gone on and lived a normal life.  The problem is he is out teaching this technique for a week or so.  I want no other surgeon to "give it a try".  Based on this, Mel is now is for all intents and purposes 'in the hospital' at our house until we can schedule her for this next, hopefully, curing surgery.  We opted to come home rather than pay a couple thousand a day for her to stay there and wait; especially since most of us know that we do rest better at home in our own bed.  We just need to keep her down as much as possible and keep her stress level down (thank you fucking American Airlines!).

Oh, to be fair and give some credit to an airline, Delta stepped up, got us home and is covering most of our fare to get Mel back to Boston when we can get her surgrery scheduled.  Remember, it was American who totally fucked up and all but literally said 'piss on her', concerning my daughter.  Thank you Delta.  You recognized a total wrong and stepped in and did what I feel is a great service to try to make things right.  Oh, American also crushed and destroyed our luggage and their new policy is that "they are not responsible" as long as the contents are still intact.   Sorry, I am really trying to not let loose on American Airlines like I feel would be appropriate.  This isn't about them.  I just wanted all to know what sort of operation they run.

Oh, I should also point out that her diagnosis would almost undoubtedly would have been missed if she wasn't in one of the most advanced OR's in the country with the top physicians treating her.  Although it's not exactly the news I wanted to hear, we now have a diagnosis, know what we are dealing with, and hopefully will have a similar team cure her in a few weeks.  Again, I can't express all the gratitude towards all of you who have been so kind during this very trying part of our family's life.  Thank you.


----------



## muleman RIP

Sounds like you took her to the right place. Anyone who is alert enough to throw up the stop flag and get consults is doing their job. While I am sure it is agonizing for you and her the time spent waiting for the right person with prior experience is certainly the route to take. I hope for a positive outcome from all this when they do get to working on this very precarious area. Hang in there and prayers for you, Mel and all your family.


----------



## Melensdad

Having a real diagnosis is 1/2 the battle.  Good luck to Mel, it appears that staying on top of this is going to lead to her ultimate recovery.


----------



## Doc

Melensdad said:


> Having a real diagnosis is 1/2 the battle.  Good luck to Mel, it appears that staying on top of this is going to lead to her ultimate recovery.


Exactly.   
Thanks for the update.  I will be thinking of Mel in the weeks to come.


----------



## XeVfTEUtaAqJHTqq

Prayers of strength for Mel and your family Brent.  You need it.


----------



## pirate_girl

Dargo said:


> *Oh, I should also point out that her diagnosis would almost undoubtedly would have been missed if she wasn't in one of the most advanced OR's in the country with the top physicians treating her*.  Although it's not exactly the news I wanted to hear, we now have a diagnosis, know what we are dealing with, and hopefully will have a similar team cure her in a few weeks.  Again, I can't express all the gratitude towards all of you who have been so kind during this very trying part of our family's life.  Thank you.


.. like you said, at least you know now what is going on.
I was really saddened to read your update on Mel, Brent.
What a circus.
I can only echo what myself and the others have been saying all along.
Continued prayers and good thoughts.
God is in control of the situation.


----------



## Cowboy

PBinWA said:


> Prayers of strength for Mel and your family Brent. You need it.


 +1 I cant say it any better then that .


----------



## baldy347

another time i that i can't say it any better than that.
   wayne


----------



## NorthernRedneck

Best of luck!  At least now you know what you're dealing with.


----------



## AAUTOFAB1

(bump)praying all is well,i hope no news is good news.


----------



## baldy347

I'll second that,i'm hoping too.


----------



## loboloco

Brent, our thoughts and prayers are with you.  I too hope no news is good news.


----------



## Dargo

Thanks all.  We are sort of in limbo right now.  My understanding is that the one surgeon who could do the procedure to fix the issue has decided that the reward isn't worth the risk and, therefore, has opted to not operate.  That leaves us.....well, waiting.  Waiting for more news.  Just yesterday I was speaking with them about her.

Basically she is just wearing out our couch and memorizing every show on TV.  She has periods where she feels well enough to get up and around and she then takes off with her boyfriend to a movie or out to eat, but that's about it.  Otherwise, it's 'couch time'.


----------



## Doc

Ahhhh poor Mel.  I feel so sorry for her.  
More prayers and good thoughts coming her way.


----------



## rc2james

Brent, I have been watching this thread and I just don’t have the words that can express my admiration for the love, strength, devotion and unending commitment in the face of such an obstacle. May all of the hopes, prayers and positive energy be yours friend.


----------



## working woman

I am really sorry and saddend to hear that Brent. Countinued prayers here


----------



## bczoom

Brent,

How's it going?


----------



## Dargo

Thanks Brian.  Unfortunately, she is still living with a leaking vein right at her brain stem.  All neurosurgeons have agreed that it would be fatal to try to reach the vein via surgery.  That was attempted but aborted.  She has the patched together skull as evidence.  One specialist at Harvard was going to try to go in through her jugular vein and 'patch' the leak from the inside but, after looking closely at the 5 tesla dye contrast MRI, he said there were too many critical turns to make to get to that place and the odds of having a fatality in surgery were higher than the chances of having success.

So, that leaves her basically living with literally blinding pain several times per week.  She is stubborn and tough.  She not only went to college, but is staying there this summer and going to go year round to make up the year she lost.  As far as any help?  I don't know.  Even having her as an in-patient and giving her Fentanyl (100X as powerful as morphine!) and Sufental (10X as powerful as Fentanyl - described as the most potent pain killer known) she only gets minor relief.  

What the neurologists now are leaning towards is basically a genetic defect.  I've had terrible migraines several times a month since I was in college (about the age of her onset).  My dad had terrible migraines from the time he was 18 until around age 50 or 51, when they subsided.  My grandfather and great-grandfather had the same symptoms as my father.  Since no MRI machines were available then, they tend to think that it is genetic.  My insurance will not pay the $15k for a 5 tesla MRI to have my brain scanned.  I've had several 1 tesla MRI's done over the years, but I'm told the difference is like watching TV on an old black and white TV with tin foil on the rabbit ears vs Blue Ray on a HD TV.  The only good thing (or bad, depends on how you want to view it) is that my ancestors have pretty well all lived to their upper 90's with one hitting 100.  So, if that is the case, it doesn't kill you or shorten your life; it just makes it miserable for about half of your life.

Due to the strength of the medications needed to give her any relief, she has to go in to IU's medical center for pain.  The problem is, as I can attest, you can't walk, drive and don't want anyone moving you when you're in that much pain.  But, obviously, medicines that strong are too dangerous to be administered outside a full medical facility with constant monitoring.  As many know, in Nam, it was common for a medic to just give a fatally wounded soldier an intentional OD of morphine to put him out of his misery.  The stuff she is talking about is at a minimum 100X as potent as that.  I suppose that's a long winded reply for "we're stumped" for any solution or remedy.


----------



## 300 H and H

Being married to a severe migrain sufferer, to the point of dibilitation, I feel for you man. The meds she takes aren't coverd by insurance either...

I will pray for your daughter, and hope that some day there is a remedy for her, as well as your family. 

Hang in there, we're all pulling for you..

Best regards, Kirk


----------



## bczoom

Dang Brent, that sucks (grin and bear it).

Have you considered Marvel's radiator Stop-Leak or similar?  I'm joking on the brand but isn't there some sort of coagulant that could stop that thing from leaking?  I understand it would have to be directed so it doesn't clog up elsewhere but does something like that exist?


----------



## Galvatron

thank you for the update....not the one i was praying for.

lets pray and hope with youth and determination on mel's side that the future does hold a cure in some way or form....love to you all.


----------



## EastTexFrank

Thanks for the update.  My heart aches for you and your daughter.

It's difficult for me to relate to the constant pain your girl is in having since I only suffered 3 or 4 migrains in my life.  I sure as hell do remember the last one even thoughit was over 15 years ago.


----------



## jimbo

Brent, the best of luck to you, and hoping for a quick and complete solution.  Having your kids hurt is about as bad as it gets.


----------



## Doc

So sorry to hear the saga continues for Mel and your family Brent.  More prayers on the way for Mel.  I can't imagine the pain she must be enduring.  Glad to hear she can focus on college and outside interests to some extent.  That has to be a huge help to her to just keep her mind somewhat busy and off the pain and issues going on internally.


----------



## Catavenger

My prayers go out to your family


----------



## pirate_girl

As always Brent, the thoughts and prayers for Mel and you all continue.


----------



## Danang Sailor

My best to you all Dargo.  Our prayer go out to your family.


----------



## AAUTOFAB1

Brent,i am praying for possitive news soon for you and your family.


----------



## baldy347

I was hoping for better news,but I'm sending all the Hope and Best Wishes that I know how. 
  wayne


----------



## Cowboy

AAUTOFAB1 said:


> Brent,i am praying for possitive news soon for you and your family.


 Ditto.


----------



## Dargo

Thanks to everyone.  Needless to say, this has been life changing for our family.  Since she is hard headed (wonder where in the hell she gets that?), she insists on catching up with her class and is making sure she maintains a 4.0  GPA in college and is already starting to read books about taking the MCAT for med school.  I sure hope they were serious at Harvard when they said that she was the type of student they would look for if she keeps her grades through undergrad school.  I honestly think that she feels that if 5 generations of my family has had to suffer through this, she is going to be the physician who finds a cure.

LOL, it just dawned on me.  While she is in med school, I'll have 3 other kids in college at that time.  I don't know how accurate it is, but when I asked what it costs to go to Harvard med school, then specialize in a particular area, I was told "Oh, about a hundred grand a year".  With the other 3 in college at that same time, I hope some can get some scholarships.  Having a 4.0 GPA, valedictorian of your class along being involved in every sport possible along with leading community activities only gets you about $1000 a year in scholarships.   When I was in school, the valedictorian had a free ride at their choice of state schools.  Changes in our grading system is what ended that I suppose.  Some years, actually many years, my HS didn't have anyone with a 4.0 GPA.  Now most high schools have a dozen or two.  I wonder if undergrad colleges have gone that way as well?

Anyway, a very sincere, heartfelt, thank you to everyone.  We are trying to make the best of a bad situation.  If it puts my business in shambles, I'm still going to take off the entire time my kids are off from school this holiday season.  I didn't see any of them, except Mel in the hospital, the entire last holiday season.  Heck, I may bankrupt myself spoiling them this year.


----------



## 3MT

Dargo - Thanks for the update. My thoughts and prayers go out to you and your family.


----------

