Sunday, December 6, 2009

Update

Sorry for leaving everyone hanging. It's hard to update when things are so crappy. It's much more motivating to type out long posts about positive things.

Anyway, we still don't know what the heck is wrong with this kid. She did better for like a week and a half but then she started screaming again. We are going to try erythromycin again for gut motility. So hopefully that helps. We tried it in the past and it helped, but then they changed it (?) and it stopped working so we quit using it. I talked to both of her docs again last week and her pedi admitted that the "gut rest" was grasping at straws. He's just the type of doctor who doesn't want to not have an answer so he suggested that, at a loss.

So, unless the erythromycin works wonders, it's probably still down to a PICC line or putting her on hospice. We can *barely* get enough calories into her to maintain on her good days. But kids can't just maintain, they need to gain. And she already looks like a concentration camp victim. No exaggeration. Normally her nurse gives her a bath. I change her diapers and stuff of course, but I don't often see her completely undressed. She doesn't hang out half nakey like other toddlers do. So I gave her a bath today and I was just *shocked*. I hadn't realized she'd gotten so bad. And then I broke down crying after I put her to bed. Because I realized she needs a LOT more calories than we can even imagine fitting into her. If the erythromycin works wonders, she might be fine. But if it only helps a little, she'll continue to starve. So it would still be down to a PICC line.

7 comments:

ady said...

Oh, sad! Poor baby. I'm thinking of you guys.

Kat_momof3 said...

I can only begin to imagine how horrible this is for you.

My prayers, as always, are with you and your family.

momtoS said...

Oh no...I will be thinking and praying for you and Charlie. I don`t really know anything about PICC lines....
I just feel heartbroken for you and Charlie...
HUGS

swgoats said...

Praying the doctors receive the wisdom needed to figure out what is going on. This gut stuff can be so mysterious sometimes... (((hugs)))

sarah said...

No matter what choice you make, I am sure it will be the right one. You are an awesome mom, and seem to just *know* what Charlie needs to make her life the best it can be...and you are not afraid to fight for what you think is right for her.

Sherrie Bee Bop said...

I am at a complete loss for words. I just hate that this is happening. I love you and will call you the minute I am done with finals next week. I had no idea it was so bad.

Cat said...

I'm keping her in my prayers, as I have done for a while now. I will have to try and remember to give you a call sometime when I get a free minute or two.