Morning

The whole earth is filled with awe at your wonders;
where morning dawns, where evening fades,
you call forth songs of joy. Psalm 65:8 (niv)

I'm not sure if joy in the morning is exactly true, but a calm, sleeping Abby is. She is still very sick, but resting. Even today, I love that I can go to bed filled with so many emotions, and wake to a new day that has possibility. As long as Abby is still here, we will still hope for her.




She is swelling a little in her face, tummy, and feet. It's not terrible, but the doctor thinks it may be early third spacing, which is just fluid in the tissue, but not what we want to see.

I thought we were done with surgeons last night, but this morning we've seen many more. Doctors are pack animals. They come in in groups, followed by more. They stop, listen, watch, and leave. I still don't understand what they're thinking.

Here's what I do know. So far, all cultures are negative. She is off isolation. Joy!

She is sleeping almost constantly. She wakes and occasionally answers us. Usually, she doesn't respond. She may have simply been exhausted from the last week. She could be drugged or she could be simply checking out. Maybe a little of them all.

They are running her feeds at 5cc/hr. Enough to remind the belly of its job, but not enough to contribute to blockage issues should they exist. She's been retching most of today. Even so out of it, that belly is trouble :/

Today we saw many residents, several surgeons, GI, the nutritionist, peds, and ortho. The general consensus is her spine is the likely culprit here, along with belly pain. Two very difficult types of pain to treat. That led to many more questions. How much do we sedate her? Do we continue g-tube feeds? Should we do straight TPN?

All roads lead to the same place, so to me, the question seems to be, how do we want her to get there? We just don't know, but continue to pray that we wouldn't have to decide.

She will have an upper GI series tomorrow morning with small bowel follow through to see how obstructed het bowel is from the spine. Ortho feels certain that she wouldn't survive a surgery to correct it, but we'll get the final word on that from the head spine doc tomorrow. This is her curve.



Her tail bone is sticking out about midway in the picture and curves up in toward the baclofen pump. Her tail bone and 3 vertebra are actually horizontal. No wonder the little sweetie hurts. When we saw this film, the nurses, Jeff and I just cringed. Our poor baby.
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This is the hardest thing we've ever been through, but Jeff and I continue to have peace about it. Now that Abby is calm, we are calmer. We are just taking one day at a time, and often one minute at a time. Of the 108 days she's been in the hospital since this began, this one is the hardest. Everyone is sad. Turning a corner from treatment to straight palliative care is never easy. We want to be kind to our daughter, and now we have to pray about what that looks like to Abby.

Please remember her tomorrow as she has more testing, and thank God for the 30 hours of straight sleep she's had.


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