Very sick - moving up the list

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has gotten very sick the last couple of days. He really hadn't been awake the majority of the day, and despite doses of lasix, he wasn't peeing. He gained 1.2 kilograms through the day yesterday (2.64) in fluid. He was moved to the PICU last night (Pediatric Intensive Care Unit) after placing a foley catheter in him on 5B. He never had a clue we put it in, he was so out of it. With his kidneys not working, his body wasn't getting rid of the morphine that was pumping in him. Shortly after cathing him we got a fair amount of urine out of his bladder. After moving him to PICU, they put him on Bipap because, although he was keeping his oxygen levels up, he wasn't releasing enough carbon dioxide from his body, so his blood was becoming acidic from it. The bipap gives extra pressure to help open his lungs up better and exhale better to get rid of the co2. From the time we'd moved him to PICU until this morning, he'd only put out 8cc's of urine (there are 30cc's in an ounce) despite doses of lasix and an additional diuretic. They decided it was time to do hemodialysis. They put a dialysis catheter in the femoral artery in his leg to pull his blood out, get rid of the excess fluid, and pump the "dryer" blood back in. By the time we got done, had lost 3.1 kilograms (6.82 pounds), 5 cm around his belly, and they'd pulled off just over a GALLON of fluid. I was amazed at how much squishier he became (he was so full he was FIRM and the stethescope left imprints on his body). I'm posting pictures on his caringbridge site from yesterday afternoon, this afternoon, and this evening (before, during, after dialysis). The doctor said that either the meds he's been on causes acute kidney failure, or the fact that his liver is

now getting much worse caused it. They're pretty sure that either way his kidneys will come back from this, it's just a matter of when, since we're not positive of the cause. Because of all this, 's PELD score (his "ranking" on the liver transplant waiting list), will now be increased, probably every few days between his liver numbers going up daily, him being in the PICU, requiring dialysis, needing respiratory assistance, etc. Dr. Khan said in situations like this, their score will often double right off the bat - he's been sitting on the list with a 14. They're going to discuss on Thursday if they're going to just keep bumping him up every so many days, or try to get him exempt status and push him to the top. finally became coherent this evening enough to converse with me. He knew he was in PICU. He said he thought it was a dream that he had a catheter. He

kept trying to pull of the bipap mask, until I explained to him the other option was going on a ventillator. He opted for the bipap - LoL. I also told him about his kidneys not working right now and needing to have dialysis to help him get rid of that fluid. And that he got very sick yesterday. He was quiet for a bit, then looked me straight in the eye and said "Mom, I hope I don't die." Needless to say I lost it. It's been a very long hard day. Slept 3 hours last night. Hoping to sleep more tonight. And that's our story. Ami mom to - 9 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, Hypothyroid, GERD, High BP, ADD, Anemia, Osteopenia, Gastroperesis, Varices mom to Emma - 13 yrs - Migraines stepmom to - 14 yrs - ADHD, ODD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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[Guest guest]

It just breaks my heart that a little 9 year old is going through so much.

You have so much strength! But I guess, what else can you do. My thoughts

are with you.

-Marie

1970 UC; 2000 colectomy; 2005 J-pouch; 2006 PSC & AIH (PSC suspected in

2000)

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http://liveearth.msn.com

[Guest guest]

God bless you Amy and may things turn around for .

I will pray for you both.

Lee

[Guest guest]

Ami-

Would you please post 's Caring Bridge site? So so sorry for your

little guy's constant and challenging medical problems. I think you are

doing amazingly well under the circumstances. All of the caregivers on

this board are amazing! But my heart especially goes out to those with

children who suffer from PSC and its complications.

--

Wife of Fred, PSC 03/04, UC 03/06