A Chelsea update

[chelsmom]

Hi Everyone.

Well the last I posted on Aug. 26  Chelsea was still in the hospital waiting to have the catheter on her 2nd VP shunt internalized and get the heck out of there.  When the surgeon went in to do this surgery he found that the previous shunt site had not healed at all and when he bearly touched the incission it opened up.  He had to remove the shunt and repair that area then he put in a whole new AV shunt in a different location.  Of course the big worry was the fact that she wasn't healing well and the possibility of infection.  At this point in time she had been put on TPN  IV feeding because she had vomited for so long (11 days) that she wasn't able to have anything on her stomach.  She still has a feeding tube.  No swallow yet.  So after the new shunt is in and they got her back to being able to hold food on her stomach and she got to come home on Sat. Sept. 2nd. 

However, that night she started having terrible head pain and vomiting again.  She didn't want to call the doctors as she thought it might have just been from the long drive home and the greater amount of food she was getting.  This continued for days and on Tues. we headed back to UCLA emergency.  She was admitted with severe hydrocephalus.  After an Xray of her swollen neck and a CT scan they could see that the shunt catheter was in the wrong vein and was not allowing the CSF to drain.  They took her into surgery that evening and after 5 hours the surgeon came out to report that she was in recovery but because she has an anomaly of the veins in her neck he had to go under her collar bone to be able to place the catheter into the correct vein.  This was now the 4th shunt revision.  I have been told by several doctors and nurses that repeated revisions happen to approx. 30% of those that need shunts. 

On Sat. Sept. 16th we came home again.  So far all is going well.  She probably sleeps 18 hours a day and is very weak.  She lost 30 lbs during this ordeal and has very little strength.  The PT and OT have been here and are getting her on a program which will help.  On Mon. Sept. 25 we go back to a the swallow specialist in the Head and Neck department and the doctor is going to do an out-patient procedure where he will insert botox to a small muscle at the top of her esophogus.  This will hopefully allow the muscle to open and allow food to pass through.  We are still waiting to see when she will start radiation.  I know it will be soon but they wanted her to have some time to heal. 

This has been a long and horrible process for all of us.  But thankfully, she is here with us with her personallity and cognitive abilities are still in tack.  The physical problems will recover with time and hard work but she will get there.  She spent her 18th Birthday at the hospital in misery.  She wants to have a belated Birthday after radiation and when she is stronger and feeling better.  This gives her something to look forward to.  Of course she has deferred this semester of school and will possibly do the same with the spring semester.

Thank you all for praying for her and all your kind thoughts.    Michelle

[ellenvig]

Wow, what an ordeal!  Good luck!!

Ellen

[HeadCase2]

Michelle,
  It's good to hear that things are moving in the right direction for Chelsea.  It's bad to hear of someone so young with these problems, but perhaps her youth will be the key to a faster recovery.
  And how are you holding up?  It's not good having had an AN myself, but I just can't imagine having one of my children with a serious AN.  Hang in there, here's hoping things continue on the road to recovery.
Regards,
 Rob

[Captain Deb]

Michelle,
I'm keeping you and Chels and your family in my thoughts today and praying that the last of the big ordeals is over for you all. And Happy Belated Birthday, Chels!!!!!
Capt Deb

[Gennysmom]

Wow, what an ordeal your family has been through...my mom tells people, when she talks about my surgery, that no matter how old your kids get, you still have that sick feeling seeing your kid hurt and in the hospital...and I didn't go through half of the stuff Chelsea did.  I hope that soon she can really start on the road to recovery...She's certainly been through the wringer. 

[matti]

Michelle - so glad to hear that Chelsea is finally home and the worst part of this ordeal is now behind her. I know she has more to endure, but with her strong fight and determination, she will no doubt sail through. I can only imagine what this is doing to you, please know that you, chelsea and your family are in my prayers.

Please wish Chelsea a Happy belated birthday.

hugs,
Cheryl

[Pembo]

Happy Belated Birthday Chelsea! I hope that the road from here on is less chaotic! Get strong Chelsea and Mom, God bless you. As a mom I can't even imagine if this happened to one of my kids.

[TaylorsMom]

5 weeks in the hospital doing PT, OT, and speech therapy for me.  I went home March 10, 2006... a day before my 18th birthday.  I was still using a walker and was really slow. (I had to learn to walk all over again)  No partying for me and that's what i planned for 18 years.  
I still have trouble writing.. it's pretty slow but i do go to college and i'm trying to get on with my life.
The facial paralysis makes me really sad sometimes... but the nerve wasn't cut and it's been almost 8 months since surgery.  Hopefully it'll get better.  Luv ya!

[Sue]

Hi Michelle and Chelsea;

Thanks for posting the updates...we are all wishing the very best for you and Chelsea and hope this is FINALLY going to be the last of the serious, serious issues for her, and to be able to concentrate on healing and regaining what was lost.  Nobody said life was fair, but, I tell you, when stuff like this happens to the kids, it REALLY doesn't seem fair.  Please give her hugs from us.

Sue in Vancouver

[Battyp]

Happy Belated Birthday Chelsea!
Yes, a party def. needs to be planned to celebrate when you're up to it!  I spent my birthday a week after surgery at home sitting in the dark dribbling ice cream down my jammies  Still not quite able to make up for it but will def try in the future!  I was thankful for an uneventful bday this year.

You have been through so much!  You'll get where you want to be just keep fighting! 

Michelle contact vocational rehab if you haven't to see if you can get help for chel's for school when she's ready to return. 

[Crazycat]

Oh my God. I don't know what to say.
  When I had my shunt surgery, it had somehow become dislodged over night and I had to be rushed back into surgery the next morning for a reinstall. Luckily, I was already in the hospital and remember very little of this episode aside from one bout of projectile vomiting.
I've now had the shunt in for a little over a year without any problems. It seems that , even with the most experienced doctors, shunt installations can be difficult.
  Has Chesea been innoculated for Meningitis? There's a vaccination, "Pneumo Vac" or something like that. It was recommended to me by my neurotologist when I visited him out of concern for a CSF leak. Research it on the net if you can.

     Take care,  Paul

[chrissmom]

Michelle,
My heart and prayers go out to you. I assumed that Chelsea was home and I was thinking that all is going well.  I am so sorry that you are going thru all of this.  We wish Chelsea a happy birthday.

When Chris was going thru all of this during the summer, he reached one really low point. He was in Intensive Care and he just kept getting worse every day.  He had infections and swallowing problems, 3 bouts of hydrocephalus, shunt removal, drain accidentally removed and finally they stuck a feeding tube down his throat and he said " Mom, I think I'm going to die".  I remember what the doctor told me... he said, " it's just a bump in the road".  It might not look that way but it is.  She is incredibly strong (and so are you).  Chelsea has had more than her share of bumps and to be sure, her road has been exceptionally bumpy.  I truly believe that she is going to make this.  Once you get over these hurdles, these young kids do indeed bounce back and fast.  These gray clouds are going to lift.  Hang in there.  Thinking of you....

Rita