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.


Posted by Heather Daley on February 28, 2024, 7:52 am | Read 242 times
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Praying that engraftment and gut healing would happen soon! It's amazing to watch how time and space aren't hindering all these sibling relationships. I know you all just ache to be together again. Praying that will also happen soon. Meantime. He's holding you in His arms and singing over you until His purpose is accomplished. Sending lots of love.

Posted by Laurie D on February 28, 2024, 8:22 am

I just got back from rounds. They are happy with her stool output decreasing, and were going to propose starting feeds again. However, because of the distended belly and the pain, they are going to do some more investigation. They will do an ultrasound of her abdomen. They will up her morphine. She has been having higher blood pressure, but it might be from the pain. Also contributing to her pain might be bone pain from engraftment (I just heard about this from an adult friend - it's really a thing.) They need to consider if these are symptoms of VOD, which she has been getting preventative meds for, because it's common. This is a liver vein thing. They aren't worried at this point, but they will be testing and observing.

Posted by joyful on February 28, 2024, 8:37 am

Glad to see her ANC going up! I hope they can resolve the belly issue. Hugs to all!

Posted by dstb on February 28, 2024, 9:22 am

Wonderful to see those smiles!!
Heather and Jon you are amazing. The way you are keeping all the kids involved and engaged, taking care of everyone's hearts. Takes energy. We were in the ER for 6 hrs recently and I just kept thinking of you guys and how draining the hospital environment is. I'll say it again, you're amazing. And noticing all the cause and effect with the pain meds. Praise to our Great God. Hallelujah for maybe engraftment! Thank you for these posts that help us with timely and specific prayers (though we know He is outside time it is nice to somewhat walk in time together) We love you.

Posted by alissa on February 28, 2024, 10:49 am

I looked up VOD, which does not mean video on demand, for those who are curious. Having done so, I decided there was no point in wading through all those big words when we don't even know if she has it or not.

Posted by Linda Wightman on February 28, 2024, 11:15 am

I love being able to pray for specific issues going on in your health journey with Grace. Thank you for keeping your prayer warriors posted. I include in every prayer, Heather, that you will feel the extra health and energy renewal you need every day.

Posted by Nancy Shee on February 28, 2024, 3:39 pm

If it hasn't been said already, VOD, veno-occlusive-disease has been confirmed.

Posted by jondaley on March 2, 2024, 7:01 am

Have they said how severe her VOD is?

"Most people have mild to moderate VOD. Some people recover without treatment within a few weeks or after they get more of the drugs given to suppress the immune system." (Not that suppressing her baby immune system seems like such a good idea....)

"Sometimes VOD is severe and can lead to liver failure. If this happens, a liver transplant may be needed." (Something for urgent prayer!)

Posted by Linda Wightman on March 2, 2024, 7:40 am

I haven't heard anyone say the level of severity, but it seems they expect it to heal without a transplant. Her retained fluids were less yesterday than the day before.

Regarding suppressing the immune system - that's the delicate balance between letting it grow and avoiding GVHD. For JMML, they even want a certain level of GVHD.

Posted by joyful on March 3, 2024, 8:11 am

I've asked about adding more liver drugs and the answer is that the three she is on for that since she got here is all they can do.

Posted by jondaley on March 3, 2024, 10:30 am
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