Re: *Ami Fox*

[Guest guest]

No, he got out a week later and they never did figure out what was wrong. The assumption was that it was something viral, due to his temp being up but his blood counts being down. His tacro levels have been in the toilet for the most part, which is really frustrating. On the other hand, a couple weeks ago he was starting to come down with something but it never really got a good hold on him, I imagine because he wasn't very immunosuppressed. We can't keep his level up because of his absorption. The docs decided to do a stool pancreatic elastase level on him, because if that level is low it can/will affect intestinal absorption. Healthy peoples' level is often above 500. They want it to be at least above 200. 's was 126. At first they weren't going to do supplement because of him not eating, but we restarted his tube feeds as of last Friday, so we're adding it into that.

Hopefully that will help. We get labs done this afternoon. His last tacro level was only 3.3 last Wednesday, so we'll see tomorrow if today's level has gone up any reasonable amount. His current Tacrolimus dose is up to 14mg three times a day. The one GI doc said he's never had ANYONE on a higher dose that 8mg three times a day. We stopped his Immodium that they'd put him on, which sucks. He'd finally stopped having water diarrhea and it had turned into mush and a bit less frequent. His food seemed to be moving through his gut, also, as he wasn't throwing it up and it wasn't getting suctioned out. But Dr. Khan was pretty sure the "something" that was trying to get him was another bout of Cholangitis. His LFT's had come up a bit (they'd been staying in or very close to range for a while now) and he had a low grade temp, in addition to increased diarrhea,

nausea, and itching again. We started him on IV Cipro twice a day at home the Friday before last, and that seems to be helping, though the diarrhea hasn't gotten better. AND, I think that's about it. He's been feeling not too bad during the afternoon. Meds time still makes him absolutely MISERABLE. I can't wait until his stomach works better so we can switch this stuff over to pills. Ami- Barb Henshaw wrote: How is doing? Is he still in the hospital? Barb in Texas - Together in the Fight, Whatever it Takes! Son

Ken (33) UC 91 - PSC 99 Listed 7/21/06 @ Baylor Dallas 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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