November 11, 2011 - Day 41

5 months, 6 days since diagnosis
day #50 of current hospital stay

Riker is STILL in pain. She woke up very pleasant but was inconsolable as soon as I touched her. The GI team is not concerned but did agree that she seems to be in a considerable amount of pain. They actually left the room for 5 minutes while Riker got a dose of IV morphine and calmed down so they could examine her and adjust her tube.

I decided I was not letting her be discharged today. She needs to be here where her pain can be appropriately managed. She's not just getting a little fussy when her meds are wearing off. She's getting down right hysterical. She is in a lot of pain.

I took the time to get more prepared for our move out of the hospital. Josh and I were able to pick up a few groceries and move a few things over. I'm taking the change of plans with stride. This is what it is like to have a sick child. I'd rather have her at 100% when we take her out of here. That way, I can observe subtle changes that could be concerning.

Mothers always know best. When I came back after dinner, she was talking to herself in her crib. She was very pleasant and smiled at me when she saw me. However, when I touched her she started to scream and it didn't get better from there. I called in the nurse and we agreed that her belly was swollen and that she is clearly in a lot of pain.

The doctor ordered an xray to look at the tube and her stomach. They were looking for air in or around the stomach. Thankfully, they didn't find anything terribly worrisome but the do see air in her intestines. They think that this is completely unrelated to her G-tube. After transplant and so much time without eating their bowels get a little slow and they have trouble moving things through. The morphine slows everything down, too, making it even worse. This could be adding to her pain.

For tonight, we'll be stopping her feeds and see what happens. Hopefully, she'll pass the gas soon on her own. If the pain lets up, we could still be discharged tomorrow but my guess is that they will put it off until Monday. Honestly, that's ok with me. These things are scarey even here in the hospital. Each day we are here is a day closer to the next milestone of day 100. When she's feeling better, then we'll get out of here.