Daley Ponderings

The last several days have been back and forth. I’ve started several posts in my head, and then they end up changing. The weekend doctors cancelled the stool studies, then the attending on Monday re-ordered them. Jon had some very frustrating conversations with the doctor, but an encouraging one with the social worker. Also, conversations with nurses and clinical assistants about ratios of pee and poop in potties and diapers. But before they actually put her on precautions, Grace got some time in the morning in the playroom with PT, who was happy with her strength for squatting and getting up and down and reaching.

I also forgot to post this picture of her walking with her shopping cart, from a couple of days ago.

Monday evening, Noah, Jeremiah, and Nathaniel took the bus and T to the apartment. We got up and headed to the hospital sort of early, but they are used to waking up early, so it was fine. I wanted to get there in time to attend rounds, since Jon is overloaded and frustrated with this attending.

Jeremiah and Nathaniel went on a hospital scavenger hunt with Jon, while Noah and Grace colored and played together.

I took the boys to lunch at the Galleria and we got back just in time for Jon to take them to Boda Borg!

Grace got her first transfusion of O+ blood. She had to get blood pressure medicine, but this time at the lowest dose, and that seemed to work a lot better than the last time. We read a lot of books, and took a nap. A volunteer came in to watch her while I went to the weekly meeting.

We discussed her pain management and Jon’s frustration with the attending (who was not able to come to the meeting. There was something happening today that made the day more crazy for all the staff – even our meeting had to change rooms and not as many people as usual were able to attend.) With the lowered dose of continuous morphine, Grace has been in more obvious pain. She has had such a high pain tolerance her whole life that it was hard to tell. But several times, the button push made such an obvious difference to her demeanor and general comfort, that we decided to put her continuous back up to where it had been. I told the doctors that I would double check with Jon first, and he agreed after I told him about it. The head doctor said it’s usually the case that the total quantity of morphine is less when it’s managed continuously rather than trying to play catch up with the button pushes.

My new theory regarding how to tell when she’s in pain is how much she is talking. Saying, “eh” for everything is so much different than using real words to communicate. I noticed a significant difference yesterday in her communication after each button push. And her desire to play rather than just lie there.

When she woke up from her nap, I asked her if her belly hurt, and put my hand on it. She said no, but indicated that I should keep my hand on her belly, and she just lay there. I asked for a button push. Then she filled her diaper and when I said it was time to change it, she said she wanted to sleep. But of course it had to be changed. After that, we got settled to go back to sleep, but it wasn’t too much longer of lying there with my hand on her belly that then she was interested in playing

She loves the routine of taking vitals, and this time she spent quite a long time taking her own blood pressure, and even tried it on the doll for a while. We go through a lot of O2 monitor stickers because she likes to put it on and off herself.

Jon and the boys had sushi buffet after Boda Borg and decided to go straight to the apartment because it was on the later side. We called to talk about the day. They completed 13 rooms, which is a lot. It was not crowded and they are a good team.

Grace was kind of unhappy when my dinner came that she couldn't eat anything (the doctors also contradicted that earlier information – they want her not to eat anything while her gut is healing.) But she was ok to sit in my lap.

I read more stories (she can say at least one word of each of our Dr. Seuss titles to indicate which one she wants next.) Then I was tired and she stood up and started getting toys out of her bin. I suggested she take them into her crib so I could sleep and amazingly enough, she agreed! So I put her in the crib with her armful of toys. She then requested “guys” which took a little while to understand, but she meant all her stuffed animals and dolls. So the nurse arranged them around her and tucked her in, and I said goodnight, and we went to bed. That’s a first for me!

I did notice that her sleeping breathing was shallow and fast. The nurse noticed it as well and gave her a couple of pushes overnight. Her belly seems firm to me, but I’m not as good at feeling that. The nurse also agrees, so she will mention it to the team today. Her O2 did not drop at all this night, though she has had trouble with that during sleeping some of the past few naps and nights.

She’s getting magnesium and platelets this morning.

And the big news of the day is – ANC 610! So it counts as the first day. Three in a row over 500 is officially engraftment. It is definitely possible that it could go down again and we have to restart the count. But it’s happening!

Please continue to pray for her belly/gut/intestines as there is something going on there. And for wisdom, rest, and good communication.