Grace had a great day today. She went out for a walk, wasn't even too upset when Heather left for Hillsboro, waved at everyone as we walked down the hallway.  (She was especially adorable today because she brought a toy vacuum cleaner instead of her normal shopping cart, which is useful for stability as well as bringing things everywhere).  Various staff members thanked her for cleaning up the hallway)

Then we went to the playroom and painted for a while and got out some plastic animals and played with those.  She brought them to the "dirty toy bin" by herself and happily came back to the room.  We got a lot of mail today - tons of stickers (we actually have reached her limit for stickers...) and a doll and a blanket and some magnets, which she did think was more interesting than the stickers, but once they were all stuck, she didn't really play with them again - I'll be interested to see if she plays with them again.  The nurses are impressed with her "fan club", we put all of your notes on the window to help remind us how many people are praying for us.

Our window with lots of cards and notes

She ate a few bites for lunch, though spit most of it back out - her taste buds are expected to be strange for quite a while.  She tried to spit out the animal cracker, but it dissolved before she had the chance and she ate two raisins right in a row, and swallowed the first one by accident...

I had a long talk with one of the nurses about what to expect and landmarks for leaving the hospital.  She will stay on various meds after she leaves, but we will be able to give them via her nasogastric tube, so we won't have to deal with the taste of the medicines.  She needs to be off her IV nutrition, which she said she is doing better than most - apparently most kids on the floor have to stop taking oral nutrition entirely and get all of the nutrition through IV, which then the gut has to "remember" how to function again, so she is one step ahead there.

Her white blood cell counts are doing well - 0, 30, 60, 115 for the past four days, if I'm remembering correctly - there might have been a 15 in there.  I've been meaning to write some software to take in the blood labs and output a graph to make it easier to see how everything is doing, but haven't gotten around to it yet.

She is still on a continuous drip of morphine, but hasn't had any Tylenol in more than 24 hours.  She did wake up roughly from her nap, so I'm wondering about "pushing the button" for the morphine, (which they halved the dose from previous, since we weren't using it anyway due to maybe causing her nausea, though we aren't 100% sure that is the case).  Her "output" is starting to get a little more normal, and her white blood cells are at work, we can see signs of healing where she used to have open sores.

She just woke up from a four hour nap, which is a lot, but less than the 12-16 hours she was sleeping just a few days ago.  She gets very frustrated when we don't understand what she is trying to say, so all of us are working on patience.

Going to the bathroom takes a long time, especially when you have to tie toilet paper around your legs...

Posted by Jon Daley on February 20, 2024, 7:52 pm | Read 101 times
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Posted by Kathy Lewis on February 20, 2024, 9:33 pm

You've mentioned only white blood cell counts. Are red blood cells not affected by the transplant?

Posted by Kathy Lewis on February 20, 2024, 11:54 pm

Continuing prayers and love for Grace and the whole family. Miracles are happening. Stay strong. God Bless all of you

Posted by Donna Houghton on February 21, 2024, 7:41 am

Wonderful to read "Grace had a great day today" and the rest of the post that followed. Blessings to you all. Continued prayers for strength, comfort, hope and healing.

Posted by Chris S on February 21, 2024, 9:53 am

Red blood cell counts are affected as well, and they do monitor them. She did get a platelet transfusion 4 or 5 days ago. I think the red blood cells aren't quite as important because they can easily put those in if they need to. The white blood cell count (and more specifically neutrophils and monocytes and the ratio between the two) show if the bone marrow is doing its job and taking hold. They also live around three days, and I think red blood cells are longer lasting, though I'm not sure about that.

Posted by Jon Daley on February 21, 2024, 11:50 am

I wondered, to our choir, if I should suggest lemons, based on the experience of one of our members who could not tolerate any food that was not sour or bitter. The choir's universal response for Grace: Bacon!

Posted by Linda Wightman on February 21, 2024, 5:14 pm

If the platelet transfusion was 4 or 5 days ago, i.e. after transfusion, is she now getting blood from donors of Faith's blood type, instead of her original type? I know about "birth mothers," and these days I cringe every time some form wants to know my "birth sex," but Grace now has a "birth blood type"!

Posted by Linda Wightman on February 21, 2024, 5:45 pm

I haven't asked recently about the blood type for transfusions. I'm assuming they would give her the new type by now.

Taste buds do change, and she hasn't wanted to eat much bacon recently. But maybe it will come back!

Posted by joyful on February 21, 2024, 9:15 pm

Grace just got blood last night, and it is still of her original type!

Posted by joyful on February 22, 2024, 7:10 am


Posted by alissa on February 22, 2024, 7:47 am
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