ERCP, Biopsy, other things

[Guest guest]

So, 's bili is coming down, but he remains miserable. He hasn't eaten since a small bit Monday evening. Wednesday was spent sleeping all day and waking up to throw up then go back to sleep. Thursday wasn't much better, though he did turn the TV on for about half an hour. When his GI came in Thursday morning, she said that she and Dr. Cass (the one who does his ERCP's) didn't think we should do the ERCP yet. (I knew this was a load of crap, because Cass told me with being on immunosuppressants now we have to get on the ERCP's quicker when he starts getting sick.) Then she comes in Thursday early evening to tell me that Dr. Cass wants to get the ERCP done as soon as possible (SEE?) and they're trying to schedule him for Friday, but weren't sure they can get any OR time and it might be evening. She then goes on to tell me that they're going to do a liver biopsy at

the same time. "Why do we need a biopsy?" I ask. "He just had one Monday." "We need to biopsy the right lobe this time." she tells me. "They were supposed to biopsy the right lobe on MONDAY." (I'm getting highly irritated by this point.) They apparently screwed up and biopsied the LEFT lobe on Monday, which we already knew was trashed. So we sat with sick all week for no good reason. The point was to do the biopsy, give a couple days to see how it came out, then determine how to do the stent replacement with the ERCP at the end of the week. If they were going to have to do the ERCP and biopsy together in the end, anyway, they could have done that on Monday. GRRRRRRRRRR!!!!!! So there is that frustration. Both of them. So on to the "other things". Apparently, when was in for transplant, they detected a murmur that no one felt

was enough of anything to tell me about or be concerned with. And apparently, it's much stronger now, enough so that it's not only been mentioned by a nurse, an intern, and his doctors, but they did an echocardiogram to see what's up. I haven't heard anything back on this yet. I'm trying to not be overly concerned about this, as I know they can be absolutely nothing. But the last time he had a murmur he had a 8 x 12 mm hole in his heart that was repaired in June. So now there should be no murmur. We've added one more insulin into his daily regimine (sp?) of shots. This one is given at 8 pm when his tube feeds start because his sugars have been getting so high during the night. So he's got that one, the 24 hour one (lantus), and the corrective doses before meals. His lung biopsy & cultures all came out good, however, with the exception of some yeast growing out on one

of them. But that's easily enough fixable with some diflucan. Yogurt would be even better, but not until I can get him to eat again, which won't happen until he feels better. So, that's our week in brief. Sorry to sound so negative, it's just been a very frustrating week and I hate sitting around being able to do nothing to fix things for him. (And on top of it, he caught a cold at RMH last week and now I have it.) Love to everybody! Ami

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[Guest guest]

Ami:

I can't be of much help to all you are expiencing but I can send you hugs.

Also, I have found out that pedialyte has a popscicle. Can he have that? I

don't know what is in it but it might be worth asking.

dee wife of bob

[Guest guest]

He's been able to have whatever he wants all week, he's just had no desire to eat anything. Today, of course, he's NPO, which just makes him all the more miserable. I guess the ERCP is set to happen this evening. One of the reasons I love Dr. Cass so much, the man will come in on a Saturday, or an evening, or whatever, rather than have sit for a couple extra days to work into his schedule better. I appreciate that so much. And your hugs are exactly the right thing, Dee, thank you! AmiDeanna Vinovich wrote: Ami:I can't be of much help to all you are expiencing but I can send you hugs. Also, I have found out that pedialyte has a popscicle. Can he have

that? I don't know what is in it but it might be worth asking.dee wife of bob

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[Guest guest]

My thoughts and prayers go out to you and the others here who are

also having a hard time.

My energies will go toward the conference in hopes that something we

do will create a positive ripple back toward those who need it.

We must find a way to influence the future of PSC , to spare this

hardship to those who follow us. To find a way to ease the way for

those on this path now.

I wish for you the strength that you need, to be the exceptional

caregiver that you are.

Lee

> So, 's bili is coming down, but he remains miserable. He

> hasn't eaten since a small bit Monday evening. Wednesday was spent

> sleeping all day and waking up to throw up then go back to sleep.

> Thursday wasn't much better, though he did turn the TV on for about

> half an hour.

>

> When his GI came in Thursday morning, she said that she and Dr.

> Cass (the one who does his ERCP's) didn't think we should do the

> ERCP yet. (I knew this was a load of crap, because Cass told me

> with being on immunosuppressants now we have to get on the

> ERCP's quicker when he starts getting sick.)

>

> His lung biopsy & cultures all came out good, however, with the

> exception of some yeast growing out on one of them. But that's

> easily enough fixable with some diflucan. Yogurt would be even

> better, but not until I can get him to eat again, which won't

> happen until he feels better.

>

> So, that's our week in brief. Sorry to sound so negative, it's

> just been a very frustrating week and I hate sitting around being

> able to do nothing to fix things for him. (And on top of it, he

> caught a cold at RMH last week and now I have it.)

[Guest guest]

Thanks. And the GI docs are rotating out today/tomorrow, rather than Sunday/Monday like they typically do. I'm SO glad about that, as the one coming on is very much about wanting to get things done, where the one on now is more about lets watch and see what happens. I'll post after everything is done and let you guys know how it went. Also when I get his ACTUAL right lobe biopsy report back. AmiMO425@... wrote: Ami, I'm so sorry to hear that there are so many complications. Rest assured you have every right to be frustrated...mad, even! It is always so hard to watch your child go through hard times, and certainly HATE to see them have to repeat a procedure

because the docs messed up. Please hang in there and keep us all posted. I'll be praying that things go well with the ERCP and that another biopsy not deemed unnecessary. (MO)

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[Guest guest]

---Just let everthing out. Thats what we are here for. We might not

beable to do much but listern and send our love to you but you should

feel a hell of a lot better letting it all out.

[Guest guest]

Dear Ami,

Feel free to vent anytime without worrying about sounding negative. That's what our group is all about. Actually, after everything you have been through just this week alone, I think that you're sounding amazingly sane. Good luck with 's biopsy and ERCP. It's time for him to start feeling better. Keep us updated about his progress, and take care of yourself. It is so frustrating to be a mom watching her child suffer, but we're all thinking of you.

Ricky

ERCP, Biopsy, other things

So, 's bili is coming down, but he remains miserable. Love to everybody!

Ami

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[Guest guest]

Ami Before was first diagnosed with PSC we were told he had a hole in his heart. After all kinds of testing they determined that he has a mis-shapened valve that when he is anemic gets real loud. There are other reasons for murmurs so hang in there. Marti Ami Fox wrote: So, 's bili is coming down, but he remains miserable. He hasn't eaten since a small bit Monday evening. Wednesday was spent sleeping all day and waking up to throw up then go back to sleep. Thursday wasn't much better, though he did turn the TV on for about half an hour. When his GI came in Thursday morning, she said that she and Dr. Cass (the one who does his ERCP's) didn't think we should do the ERCP yet. (I knew this was a load of

crap, because Cass told me with being on immunosuppressants now we have to get on the ERCP's quicker when he starts getting sick.) Then she comes in Thursday early evening to tell me that Dr. Cass wants to get the ERCP done as soon as possible (SEE?) and they're trying to schedule him for Friday, but weren't sure they can get any OR time and it might be evening. She then goes on to tell me that they're going to do a liver biopsy at the same time. "Why do we need a biopsy?" I ask. "He just had one Monday." "We need to biopsy the right lobe this time." she tells me. "They were supposed to biopsy the right lobe on MONDAY." (I'm getting highly irritated by this point.) They apparently screwed up and biopsied the LEFT lobe on Monday, which we already knew was trashed. So we sat with sick all week for no good reason. The point was to do the biopsy, give a couple days to see

how it came out, then determine how to do the stent replacement with the ERCP at the end of the week. If they were going to have to do the ERCP and biopsy together in the end, anyway, they could have done that on Monday. GRRRRRRRRRR!!!!!! So there is that frustration. Both of them. So on to the "other things". Apparently, when was in for transplant, they detected a murmur that no one felt was enough of anything to tell me about or be concerned with. And apparently, it's much stronger now, enough so that it's not only been mentioned by a nurse, an intern, and his doctors, but they did an echocardiogram to see what's up. I haven't heard anything back on this yet. I'm trying to not be overly concerned about this, as I know they can be absolutely nothing. But the last time he had a murmur he had a 8 x 12 mm hole in his heart that was repaired in June. So now

there should be no murmur. We've added one more insulin into his daily regimine (sp?) of shots. This one is given at 8 pm when his tube feeds start because his sugars have been getting so high during the night. So he's got that one, the 24 hour one (lantus), and the corrective doses before meals. His lung biopsy & cultures all came out good, however, with the exception of some yeast growing out on one of them. But that's easily enough fixable with some diflucan. Yogurt would be even better, but not until I can get him to eat again, which won't happen until he feels better. So, that's our week in brief. Sorry to sound so negative, it's just been a very frustrating week and I hate sitting around being able to do nothing to fix things for him. (And on top of it, he caught a cold at RMH last week and now I have it.) Love to everybody! Ami Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

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[Guest guest]

Sometimes knowing someone is listening and loving you is all that matters. And this week is definitely one of those times. So thanks!! Btw - I love your name!! Amikelly-joy wrote: ---Just let everthing out. Thats what we are here for. We might not beable to do much but listern and send our love to you but you should feel a hell of a lot better letting it all out.

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[Guest guest]

did for sure have a hole in his heart. He'd had it since birth, but it got much bigger when his lungs got so bad. He had the hole repaired last summer. I did hear from the doctor that the murmur seems to be coming from where 's pulmonary artery was connected to the one that came with his new (a bit smaller) lungs. So the plumbing goes down a size smaller and therefore there is more pressure. He said it's nothing that is an issue right now, though we'll likely have to address it down the road after the liver is taken care of and other things are fixed. I'm glad to hear 's wasn't something requiring surgery!!! Ami Marti wrote: Ami Before was first diagnosed with PSC we were told he had a hole in his heart. After all kinds of testing they determined that he has a mis-shapened valve that when he is anemic gets real loud. There are other reasons for murmurs so hang in there. Marti

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