update (long-ish, sorry - thyroid portion is 3rd paragraph)

[Guest guest]

I will likely be using this email as my update for the caring bridge

site, as I had the update almost written last night (Thursday) and

then lost it.

So, 's been feeling definitely better the last few days. He's

eating like a pig again, which is a great change from the way the

whole week and a half prior. His mood is much better, along with

his pain level. All Wednesday and Thursday I could hardly keep him

in his room, which is wonderful (though tiring for me - LoL).

His Prograf level (one of his anti-rejection drugs) has been too low

the past week or so, meaning either they're not giving him enough

(not the case) or he's losing most of it and not absorbing it (most

likely). We were all confused about this. Dr. Milla started him on

IV Prograf Thursday so he has a constant drip of it running now, but

I'm not sure how long he'll be on this way and when he'll get

switched back over. We can't keep him on the constant drip and have

him discharged. It may be possible we've found the problem,

though. His thyroid hormone levels from yesterday were ridiculous!

His TSH had suddenly (from 4 or so weeks ago) gone from over 20 to

1.94 and his free T4 jumped up to 2.76 (which is too high). So now

it looks like he's HYPERthyroid, instead of HYPOthyroid. And he has

been having quite a bit of worse diarrhea than normal, so that could

explain the diarrhea, which would, in turn, explain him suddenly not

absorbing the Prograf. Endocrine is rechecking his thyroid levels

to make sure it's not a lab mistake (we've had that happen before).

(His nurse just checked for me, and his TSH now says 7 something and

his fT4 says 1.76, so that makes definitely more sense. They were

talking about bringing him from 175 mcg down to 150 mcg depending on

the results, but I'd almost rather leave him where he is unless he

actually DOES go hyper. The diarrhea is MORE likely due to him

being on Ceftax, Imipenim, and Vancomycin for almost 2 weeks now.)

Speaking of Endocrine - is now on 4 different insulins every

day. 1 long acting dose at noon. 2 over-night doses to cover him

for his feeds. up to 5 or more correction doses during the day.

(Plus the 2 dDAVP shots.) I'm trying to talk him into trying the

insulin pump, as that would cover all of those injections (except

the dDAVP) and would make BOTH of our lives easier. I just can't

see him getting all those shots if he doesn't HAVE to. Seems silly

to me. Like Wednesday, he probably got 10 shots, between Epogen,

dDAVP twice, 3 longer insulins, and 4-ish corrections. That's no

good.

They're checking 's most recent liver biopsy sample for LCH, and

I'm very anxiously awaiting news on that. (http://www.histio.org

for more information on Langerhan's Cell Histiocytosis.)

Results from the biopsy itself basically show that he had

cholangitis at the time (which we knew) because it was bile stained

(though not nearly as bad as the left lobe) and had " bridging portal

fibrosis " . Of course, I had no idea what " bridging fibrosis " is, so

I asked Dr. Sharp, who said it's scarring. He said there were some

of the doctors who thought, if the right lobe was okay, we could

remove the left lobe. He said this is not an option. The only

other option, to my knowledge, was transplant. So I assume that's

what we'll be needing to do. This hasn't been the official word,

yet, but I can only assume this is because Dr. Sharp is waiting for

the results on the LCH stains & stuff, so we can maybe know for sure

what we're dealing with. (I've got a strong feeling he DOES have

LCH, but my feeling is just as strong that it won't show up on these

stains, either.) This part of things continues to be frustrating,

as the only way Pulmonary Fibrosis, Sclerosing Cholangitis, Diabetes

Insipidus, and Hypothyroidism all together in an 8 year old (7, 6)

makes sense is if he has LCH. Anyway, when we get the " official "

transplant word on the liver, he'll get listed for a cadaver donor,

but then we'll look for a live donor. Start with testing me (since

he has no full-blood siblings), then go to the girls & other

relatives (don't think they'll allow the girls because of under 18),

then to other people (friends, etc). 's A positive, so we need

either A blood types or O (I'm O positive).

's lungs are doing BEAUTIFULLY. Dr. Milla has been so impressed

with how well he's been doing from a lung transplant perspective.

's been just amazing!!

Got Emma's report card a couple days ago. She's got all A's and a

B. The kid is doing just amazing in school here. She sprained her

ankle today after lunch, though - LoL. So she's on crutches for the

first time in her life. It's not nearly as cool to her as she

thought it was going to be - LoL.

My friend from home is going to be up here tomorrow to see me

and I'm sooooooooooo excited about it. This will be the first and

only friend from home who has come JUST to see me since we've been

here and I'll seriously probably cry - LoL. (Three of my friends

from the area came to see me, though, back in October, and

THAT rocked, but that's been a while. Jon's and my mothers and

sisters have come a number of times, though, and I love them all to

death and am so grateful to have them all!!!) But my FRIEND is

coming and I'm ready to pee my pants over it - LoL.

And really I can't think of much else to tell you about right now.

Just waiting waiting waiting. As soon as I hear anything more, I'll

let you guys know!

Hugs!!

Ami

http://www.caringbridge.com/visit/seanfox