Heather is better at writing the updates than I am, though I've been intending to write a few since we've been back in the hospital.

She has been doing quite well the last few days and much more cheery.  Nothing like a colonoscopy to cheer you up I guess.  I hadn't been paying attention (that they hadn't given her any prep drink stuff) before the colonoscopy, but they had decided to do just a sigmoidoscopy instead of a full one, so I was surprised by that when discussing the plans with the GI proceduralist just before getting it done.  He said he would go as far as safe, and went in 20-25 cm, which was bigger than he had gestured with his hands, but I assume is what he was planning on doing from the start, but was just being as nice as he could be to me.

The endoscopy (from the top) was clear, and I was surprised to learn that they started the procedure without intubating her at all, but she had some trouble breathing on her own and so stopped and intubated (using the correct size tube - he was listening - I told about 6 people that day who all said they would get the message to the right person; sometimes they previously have not listened to me, or paid attention to her chart, and used a larger tube than fits well for Grace).

We are still waiting on some viral reports that should come back tomorrow, but she has been officially diagnosed with GVHD*, despite all of the oncology providers thinking that wasn't going to be the case and all of the non-oncology providers assuming it would be the issue, so that is curious to me.  If you read the symptoms at the previous link, you'll see that she doesn't have most of the symptoms, and so I think they are used to seeing more symptoms so figured it was something else.

Fortunately, GVHD treatment, at least when symptoms are this mild (I think they are calling it chronic GVHD as opposed to acute; I'm not sure how to estimate the amount of diarrhea to see how it compares to the information at that link), are not what I was expecting, but she will be on a daily steroid for a week or two and then we'll reevaluate how she is doing.  I'm going to ask tomorrow about whether she has to stay on a restricted diet (she is currently on a BRAT diet, despite all the nurses saying how wonderful a patient she is - it actually means Bananas, Rice, Applesauce, Toast) .  We've been modifying that a little bit, partly because I know nutrition doesn't think that much of the diet and I'd rather she eat some more if she is willing.  She has been eating tons of bananas, which that might be a good factor in convincing the doctor to let her eat other things, she was concerned today because her diet is mostly bananas and she was eating them multiple times during rounds, so that is all they have seen her eat - I always wonder what the cafeteria thinks when I call down for a meal and order 4 bananas and nothing else....  The doctor thought she might get sick of them and then stop eating altogether.  But, she asked for a bagel yesterday, so I found her some dairy-free bagels - the hospital only had ones made with milk, and she often has some rice crispies - she enjoyed going to the kitchen today while we were out on a walk, and picked an English muffin with jelly.  She has been looking longingly at my fruit and salads that Pam brought when she visited.

She is done with her IV nutrition that she was on for a few days, which mostly gets absorbed by the body and doesn't go through the stomach, so gave her gut a rest for a few days.  They have been tapering up her regular baby formula and tapering down the IV nutrition and lipids, which will finish tomorrow.  Her stools have been the best they have been in months, so we hope that will continue, and the steroids are supposed to help with that as well.

She gets kind of listless when we talk about medical stuff too much, and she was upset upon hearing that they were going to add another medication to her regimen.  I did ask the psychologist to come today, but we were both taking a nap this afternoon, so she is going to come back tomorrow.  I'm interested in talking to her because Grace has long not admitted she is in pain - I forget when she stopped asking for morphine and has always said she has been fine for months.  The other day, I asked her about the bone marrow aspirate site and touched it and she said she was fine, but tears started to come.  And then later, she was touching it herself, and when she saw me notice, she whipped her hand out and pulled down her shirt like I had caught her in a cookie jar or something, so that is pretty interesting to me, that she wants to be tough and not admit she is in pain or something.  We talked about it some, but it would be useful if she would tell us about her pain level, so figure a conversation with the psychologist might help.

She is currently on formula 24 hours a day, which is harder on us, because if she rolls over in her sleep or even some tiny movements, can block the tube and the machine has a pretty loud, incessant beeping, that we then have to trace down the problem and restart the machine.  So, I need to talk to nutrition about what they think about scaling up the rate during the day, so we can skip it overnight.  From the nurses, I gather that most people run it 24 hours a day.  Previously, we had gotten the rate up much higher, and so only needed to run it 8 hours a day or so.

The rest of the family went to Camp Maranatha today, and we should be joining them on Wednesday, with a small chance of leaving the hospital tomorrow night.

* Note, I like to say that parents that name their kid with meanings that can be negative are just asking for it (I can't actually find any real names that I've known someone, though there are plenty of funny examples that is hard to imagine thinking was going to be a good idea, like Rebel, Vengeance).  But, we apparently were planning ahead naming her Grace Victoria Daley, since now she has GVHD...


Posted by Jon Daley on July 1, 2024, 10:21 pm | Read 101 times
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That's a good observation, about her seeming afraid to show when she is in pain. Faith, too, usually says "fine" when we ask her how she's doing. My father always replied, "Fantastic!" when asked the same question. It will be interesting to learn what the psychologist thinks.

That's great news that she really wants to eat! As long as she doesn't get so frustrated she gives up.

Many people have a double middle name. Grace Victoria Hallelujah Daley?

Is now the time for a little parental discipline? "Grace Victoria, stop fighting with your sister!"

Posted by Linda Wightman on July 2, 2024, 6:31 am


Posted by Kathy Lewis on July 2, 2024, 6:11 pm

When we were naming her, I had this vague feeling that her initials were a disease. But Jon looked it up on the internet and couldn't find any disease that was GVD. It was about a month into transplant when I looked at a poster on the door and it finally dawned on me that it was GVHD that I was thinking of.

Posted by joyful on July 2, 2024, 10:11 pm
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