Friday, November 13, 2009

The whole story....

Ok I have a little more energy now so I'll tell more about what has happened the last 2-3 weeks.

Charlie started waking up from a dead sleep just screaming. She'd been waking up agitated, and sometimes whimpering, but after a couple of weeks she was full-blown screaming for sometimes over an hour. She did this for about a week and then she started screaming during the day too. By that time I was pretty sure it was her feeds causing it because she was also retching more and would get better if I turned her feed off. By Saturday the 24th she was screaming when we'd just feed her pedialyte so we took her to the ER.

They did x-rays and a ct scan and put her on IV fluids. They couldn't find anything physically wrong with her or her tube. But we did determine it was her feeds. She'd scream after someone examined her belly and she screamed when they gave her the contrast for the ct scan and screamed when they tried pedialyte at 10 mls an hour. :-(

So we discussed our options. I talked to 3 different doctors about the pros and cons of a PICC line. Pro: She'd get fed. Cons: Very susceptible to very serious infections, over long-term she'd suffer liver damage, her nurse wouldn't be able to do anything with the PICC line, and we'd still have to do some meds in her tube and over time that could become painful for her (it already is to some extent). I decided it wasn't worth it and took her home. The next day we decided to take her in for a tube change. They didn't see anything wrong with the tube, but what the hey, ya know? She actually did a little better on her feeds for a few days after that. Then she started going down hill again.

She started waking up in a cold sweat and her HR was erratic, on top of all her other problems (she's also been battling some kind of illness, culture came back + for psuedomonas). I took her to the pedi and he said his only suggestion was to try a gut rest. That would mean a PICC line for about a month and then trying her feeds again. He agrees that a long-term line is not a good solution.

So that's where we're at. I told palliative care what he said and they are going to discuss it at their meeting. And we'll go from there.

13 comments:

ady said...

Oh, I'm so sorry to hear that. I hope just resting her tummy will solve the problem. :(

Kim and Asa said...

Shauna, I've been thinking of you and Charlie and Aiden. After p2p went down I kept checking for updates, praying things were better. I'm so sorry they are so much worse.

momtoS said...

I am so sorry to hear that Charlie is not doing well...thinking of you....

Kat_momof3 said...

I'm so sorry for all that is going on... I'm praying for your family as always.

I know you will do what is best for Charlie to keep her as content and comfortable as she can be.

But I know that it has to be a gutwrenching struggle to try to decide how much medical intervention is too much, and when the cons outweigh the pros.

Kathryn said...

I'm so sorry. :( That really sounds a lot like the issues we've been having with Lily's gut too.

Megan said...

I just followed your link from DS, and your intro to your blog (under "My Sweet Little Girl..." brought tears to my eyes. My nephew is special needs, and at a first glance, most people just see him as special needs. I KNOW him, and I know his little quirks, his little grunts he makes when he's being silly, and I know the slobbery kisses he gives me that let me know that he remembers me, and he loves me. He's another kid who will likely never talk or walk, but we have faith, and we love every little thing he does, because he's ALIVE. :-D

penny said...

Hey, Shauna, it's Laura , I hope Charlie will be better... thinking about you & charlie & aiden, bye

Anonymous said...

Hey, I've been reading your blog for a long time, and I just wanted to reach out. We have a girl who struggles with some of the same things as Charlie does, and I was thinking of a sugestion when I read your last post. Do you have a mailaddy where I can mail you so it's more private? :)

momtoS said...

I was thinking of you and Charlie today....wondering how you are both doing....thinking and praying for you.

swgoats said...

Oh dear, I'm a little late here. We've been busy, and I just realized I hadn't checked in on C in awhile. I'm so sorry she's been hurting. I hope this gut rest will solve the trouble for her. Seems like it is always something, doesn't it? Joe has been going through a stint of not wanting to drink for the past month - eating but not drinking without some major coaxing. I don't know what goes on with these kids... Seems like he's on the upswing now. I pray C sees the upswing soon herself.

kozer1 said...

I was thinking of Charlie today, and decided to check for an update. I hope everything is okay and that she is comfortable. ((HUGS))

Angie said...

Just checking in. I couldn't leave without telling you that your family is in my thoughts often and I hope everything is okay.

momtoS said...

Just popping in to see if there is an update. I hope and pray that all is well.