justin

[Guest guest]

Thanks for the update. Hope you can get some rest tonight. Glad is doing so well - pizza and all.

Barby

married 22 years, mom of 5 sons (ages 9-20) KS

UC - dx in 1965 (11yo), total proctocolectomy with ileoostomy 1972, BCIR (continent ileoostomy)1994

PSC- dx in 1999

nordgren1@...

[Guest guest]

Hello all,

I'm going to just make this an overall post. Thanks

for all your help. I'll tell you about last night and

today.

Last night they talked about doing a biopsy, numbers

were going up. Said no because his platelettes were

too low, so gave him some. What I didn't know is that

they then planned it for this morning, so when I got

up there at 11, it was done. They took some of his

staples out and did it that way. He didn't much care

for it. Anyway, then dr. was afraid liver was twisted,

had shifted a bit. Did MRA to check it. Wasn't true,

so did ultrasound to check artery to see if they

needed to go back in to untie another artery.

So....finally at 4, they decided that it is rejection

and started a cocktail of steroids. When he found that

he didn't have to have surgery, he decided he was

famished and couldn't wait for his liquid supper.

Begged for real food. I had to go buy him jello and

pudding to last an hour. Then he got soup, jello, ice

cream and such. That wasn't enough so he wanted a

baked potato...if they don't have that, get me pizza.

It was ok'd so he ended up with a pepperoni pizza.

Luckily I snatched one measly piece before he devoured

the rest. Before I left, he had me get him a snickers.

Hope he doesn't pay for it tonight. His moods are

still as you all say...changing. When he puts this

sleep deprived mommy close to the edge, I just leave

for a while. He's always better upon my return.

Nurse practicioner(?) for transplant team assured me

that they have never lost a liver for this kind of

rejection. Said it's common for people his age because

their immune system is still so strong. Said if this

drug didn't stop it, there were many more they could

try.

He had actually been walking the halls yesterday and

of course couldn't get up til this evening, which he

still hadn't when I left.

So,,,all seems to be back under control. Me, I'm ready

for bed because I'm sure I'll get a phone call in the

night, my favorite thing!

Later, and thanks

Ruth

__________________________________________________

[Guest guest]

Thanks for

the update. Hope you can get some rest tonight.

Glad is doing so well - pizza and all.

Barby

married 22

years, mom of 5 sons (ages 9-20) KS

UC - dx in 1965 (11yo), total proctocolectomy with ileoostomy 1972,

BCIR (continent ileoostomy)1994

PSC- dx in 1999

nordgren1@...

I want to add my good wishes for a good restful night, too.

Being a mother is a trying job and with the added strain you have to

be exhausted. is one lucky young man to have you.

Hope everything is better tomorrow and the days after.

keep up the good work and heal fast and hug and kiss your mom as soon

as you can.

Dee in Peoria

[Guest guest]

From one mom to another - I feel your anxiety and exhaustion and smell

the smells as though I were right there. I will be praying for you. As a

" new member " I am curious about - his age and when he was dx etc.

Anyone ? Faith ('s mom)

________________________________________________________________

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