RE: update & where to view transplant list

[Guest guest]

I read this with tears in my eyes. Life is just not fair.

update & where to view transplant list

So, 's pneumatosis is completely gone.

Last Monday they started slowly working him back into his tube feeds. Pedialyte the first few days started slow and working to his full rate. Then half Pedialyte half Peptamin half rate up to full rate. Then full Peptamin half rate up to full rate. At the same time the weaned back the TPN. By yesterday morning he was full rate full strength tube feeds and no TPN. He was also back to belly ache, vomitting, and miserable.

I walked out in the hall and started crying. What the h*ll is a mother supposed to do? He's had four weeks of feeling GREAT, even with that pneumatosis which should have had him in pain, because of no tube feeds. He was acting like before he got sick. But, if we don't run the tube feeds, then it's TPN. And we all know how good that isn't for his already shot to sh*t liver. Anyway, the GI attending that's on now (all the GI attendings, in fact) finally got to see the real over the past few weeks. So when she came in yesterday morning and saw how miserable he was (which is how he is with his feeds), so decided that was not acceptable, put him back on half strentgth Peptamin (with half Pedialyte) running at half rate, and half TPN. Within a couple hours he felt a fair bit better.

HOWEVER, by 8:30 last night his temp was 101. Line cultures, of course. But his LFT's are up, also. Bili isn't bad (1.4) for him. But ALT and AST are 111 and 130 (don't remember which was which) and his Alk Phos is 596.

Here's the kicker . . . I know the fever is because he's getting clogged up again. I mean, look at that Alk Phos and tell me he's not obstructed. Two more days will be FIVE WEEKS since his last ERCP (which, as you guys know, is the longest 's ever gone without one). But the GI's don't want him to have it done until absolutely necessary anymore, because they think the last one had something to do with him developing that pneumatosis. I'm so frustrated right now I could spit.

One thing Dr. Sharp said when he was on last week is that, since doing the frequent ERCP's was the only thing keeping 's numbers down, he should be able to get him bumped up on the list higher and hopefully get him tx'd sooner.

And I guess that's about all I have to say. Other than I want to cry.

Ami

Ami

mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility

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

mom to Emma - 12 yrs - Migraines, otherwise healthy

stepmom to - 13 yrs - ADD, RAD

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

I read this with tears in my eyes. Life is just not fair.

update & where to view transplant list

So, 's pneumatosis is completely gone.

Last Monday they started slowly working him back into his tube feeds. Pedialyte the first few days started slow and working to his full rate. Then half Pedialyte half Peptamin half rate up to full rate. Then full Peptamin half rate up to full rate. At the same time the weaned back the TPN. By yesterday morning he was full rate full strength tube feeds and no TPN. He was also back to belly ache, vomitting, and miserable.

I walked out in the hall and started crying. What the h*ll is a mother supposed to do? He's had four weeks of feeling GREAT, even with that pneumatosis which should have had him in pain, because of no tube feeds. He was acting like before he got sick. But, if we don't run the tube feeds, then it's TPN. And we all know how good that isn't for his already shot to sh*t liver. Anyway, the GI attending that's on now (all the GI attendings, in fact) finally got to see the real over the past few weeks. So when she came in yesterday morning and saw how miserable he was (which is how he is with his feeds), so decided that was not acceptable, put him back on half strentgth Peptamin (with half Pedialyte) running at half rate, and half TPN. Within a couple hours he felt a fair bit better.

HOWEVER, by 8:30 last night his temp was 101. Line cultures, of course. But his LFT's are up, also. Bili isn't bad (1.4) for him. But ALT and AST are 111 and 130 (don't remember which was which) and his Alk Phos is 596.

Here's the kicker . . . I know the fever is because he's getting clogged up again. I mean, look at that Alk Phos and tell me he's not obstructed. Two more days will be FIVE WEEKS since his last ERCP (which, as you guys know, is the longest 's ever gone without one). But the GI's don't want him to have it done until absolutely necessary anymore, because they think the last one had something to do with him developing that pneumatosis. I'm so frustrated right now I could spit.

One thing Dr. Sharp said when he was on last week is that, since doing the frequent ERCP's was the only thing keeping 's numbers down, he should be able to get him bumped up on the list higher and hopefully get him tx'd sooner.

And I guess that's about all I have to say. Other than I want to cry.

Ami

Ami

mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility

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

mom to Emma - 12 yrs - Migraines, otherwise healthy

stepmom to - 13 yrs - ADD, RAD

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Ami,

First of all, a huge big hug to you. This sucks! None of this should happen to these babies or anybody.

Can your doctor get exception points? I am thinking this is something to be asking for at this point. I don't know the complete ins and outs of how that works...I honestly would go on that site www.liverfamilies.net and see if you can get any feedback there. I see alot on there about exception points getting the little ones a lot farther. It is a mostly BA site, but they welcome us there. There is a moderated chat tonight where you could get a lot of back and forth. Someone here might be able to pipe up about it also. There is a ton of transplant experience there that we don't all have here. Many of the people stick around after transplant to give help which I think is so important to the people who are like us. I am sure it is hard for some who would like to say goodbye to the days of sickness.

Anyway, you know how to reach me if you need to talk.

Love,

[Guest guest]

Ami,

First of all, a huge big hug to you. This sucks! None of this should happen to these babies or anybody.

Can your doctor get exception points? I am thinking this is something to be asking for at this point. I don't know the complete ins and outs of how that works...I honestly would go on that site www.liverfamilies.net and see if you can get any feedback there. I see alot on there about exception points getting the little ones a lot farther. It is a mostly BA site, but they welcome us there. There is a moderated chat tonight where you could get a lot of back and forth. Someone here might be able to pipe up about it also. There is a ton of transplant experience there that we don't all have here. Many of the people stick around after transplant to give help which I think is so important to the people who are like us. I am sure it is hard for some who would like to say goodbye to the days of sickness.

Anyway, you know how to reach me if you need to talk.

Love,

[Guest guest]

You are correct. They were considering living donor. I did the evaluation, and they found nothing to prevent me from being his donor. Everything looked good. However, the surgeon wanted to give him a few months and see if a cadaver liver came available that would be large enough to split between and someone else, first. If nothing turned up by December or so, then we'd tx using mine. Hopefully with the turn things seem to be taking right now, he'll get it sooner rather than later. Am hoping the resident comes back with some kind of plan from the attending. AmiDeb in VA wrote: Ami,I'm confused. I thought they were considering living donor transplant for ? Did I remember a different wee one on our group? It makes me sick to hear how awful he has it. I am thankful that he's had a few weeks of life without constant vomiting. Oh, Ami, you are such a strong, strong woman. I'm praying that he'll be one of those miracle guys who comes out of it like a trooper once things finally line up for him. Bug the heck out of those docs to PLEASE, PLEASE find a way to get him transplanted ASAP!!! It seems like that's the only answer left...I'll keep praying. Many hugs,Deb in VA Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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[Guest guest]

Ami,

What a roller coaster. I'm at a loss of words, but I want to convey

that my every hope and prayer are with you both. I can't imagine a

harder situation. Not one, but two types of transplants to manage,

plus...It exhausts me thinking about it. I wish I could help out

somehow -

Hugs,

Deb in VA