Once again, it was good for me to visit home. This time, I brought Joy back with me. We left later than I meant to, for various reasons (one being the second batch of Victory tshirts came in!) so we had a bit more traffic in Boston than I have yet driven in. It was stressful for Joy, I think, but I am getting used to it.

Grace was so happy to see Joy! They have a secret handshake that in the past Grace has sometimes rather reluctantly done. But this time, she volunteered all the pieces, including the last one, and that made Joy happy, too.

It was Jon's turn at the apartment, and Joy went with him. They had a great daddy-daughter time, with lots of talking and snuggling and even a late night movie. In the morning, Jon made her breakfast in bed, and she felt like a princess. They went for a walk and found a cool playground. They got sushi for Joy to bring up and eat at the hospital.

As I mentioned in my quick post, the attending doctor was concerned about her diarrhea output, at first reducing her feeds, and then eliminating them. Grace has also gotten a few platelet transfusions to help the healing of the gut.

Thursday evening, my cousin Kevin came up to hang out with Grace and Joy while Jon and I got a date. We weren't quite sure what we wanted to do, so we started out at the apartment, but then ate dinner at the Milkweed which is right on the corner where our apartment is. It is an interesting combination of Mexican and other cuisines, and delicious. We could have just split the one appetizer as our dinner. But the salmon with green curry was nice, too and fun to have for leftovers at breakfast. 

We got back to the hospital a little after 9. Kevin and Joy had read Grace to sleep and then they talked about all sorts of things. Joy and I walked back to the apartment.

She woke up earlier than usual, because it was her birthday! She is now a teenager. She and I split my leftover salmon for breakfast. Back at the hospital, there was a sign and balloons on Grace’s door.

They had done a nasal swab on Grace because of some congestion or something they found in the middle of the night (Jon did not get a good sleep.) So she was not allowed to go out to walk until her results finally came back negative at shift change time.

Jon went out to the Dana Farber resource room and talked with another mom on the way, which was good. He also got some food at the Galleria and then he and Joy headed home for Joy's birthday celebration and Jonathan and Noah's orchestra concert.

Grace fell asleep pretty soon after her evening walk. The night was uneventful.

But apparently, her stool output got reported high again and the doctors are concerned enough that they are considering a colonoscopy to try to see what’s going on. I'm sure that number was a mistake, since she had several pee-only diapers, and in my observation, less stool. Of course it's hard to tell – in a diaper or in the potty – what's pee mixed with diarrhea and what's plain diarrhea. And I really don't want her to go through a colonoscopy again. They're doing stool cultures again (given that they can find enough stool to do cultures on. Wait – too much stool, or not enough stool?) so her last night's freedom was short-lived. She has only asked once for a walk so far. We have read books and listened to the orchestra concert video several times. She even ate a few bites of chips and salad.

I keep forgetting to mention that she has lost a bunch of hair but not all of it. It was coming out in chunks for several days there, but now it’s hanging on. Now she can do the old man combover thing! But I can also get it to look reasonable.

Her ANC was 200 this morning.

Posted by Heather Daley on February 24, 2024, 4:09 pm | Read 664 times
Category Grace: [first] [previous] [next] [newest]
Comments

They eliminated her feeds but she's allowed to eat chips and salad?

Go, Kevin! Thank you.

I can't imagine how out-of-whack her gut biome must be at this point.

Posted by Linda Wightman on February 24, 2024, 5:26 pm

It's because what she eats by mouth is hardly anything and we still want to encourage her to try.

Posted by joyful on February 24, 2024, 5:29 pm
Add Comment
Add comment
E-mail me when comments occur on this article

culpable-adaptable