Saturday, August 22, 2009


We had our first care meeting on Wednesday morning. We were all so excited that the doctors, even the doctor representing palliative care and Hospice, never mentioned a DNR! They were all so wonderful and listened to us, GENUINELY! We made up a plan and set goals to get her home, get her on physical therapy, and get her equipment that will make our lives easier like a special 'Kid Cart' and a mesh netting for the bathtub so we can submerge her for her baths without using a newborn bathtub. They also have a neat program at PCH for music therapy. A guy comes in and sings and dances for the kids! They're signing her up for that, too.

She's been peeing very well since the catheter's been out and pooping well, too. She's now on a formula called Peptomen 1.5 that has a higher calorie count (more concentrated, basically) so they can give her less without skimping on the good stuff, so to say. They're hoping it helps with her belly still being so swollen, but so far it hasn't. They're supplementing water in her diet by giving her little bits at a time through her G-tube (one that goes to her stomach). It's not working out too well, though. When they gave her an ounce yesterday and clamped it shut (so it'd actually absorb instesd of draining out) she ended up throwing up water and stomach acid! They unclamped it and as soon as they did stomach acid was GUSHING out faster than I've EVER seen! The diaper it drains into was FILLED before the nurse even left the room! Poor baby, she just really needs the G-tube to be able to constantly drain now. They stopped the water for now and might try it again in a day or so.

The doctor has also noticed that her color is looking better! She has some days that are better than others, but overall it's gotten SO much better! We're all anxiously awaiting her blood test results to see how her liver's doing now.

Also, the last blood test they did showed lowered white blood cell counts and they were worried she might have pneumonia. We did a chest x-ray on her yesterday to check and are once again awaiting the results. Her platelet level in her blood was also low and they were debating doing a blood transfusion (she's had a few, so I wasn't worried). I haven't heard back whether they did one or not, but I'll post when I hear more.

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