Day +4

Grace has not thrown up at all today! She even had an episode where she ate too much macaroni at once, and was able to spit it out without actually throwing up.

She does have evidence of the mucositis in her intestines, and a little bit in her mouth, but that part is doing pretty well. They are planning on putting in an NG tube tomorrow, so that she can start getting good nutrition. She will be able to eat even with it in, so she can try as much as she wants. Then they'll be able to give her meds through the NG tube, and any extra nutrition that she can't get in by mouth. They like to put in the NG tube after it's evident that she's not getting enough nutrition but before the mucositis is so bad that it hurts too much to put the tube in.

Yesterday I was feeling like, "Well, that was an adventure. Now can we go home?"

It was hard for me to see Jon for a little bit yesterday, and then have to say goodbye again. But he and Jeremiah are coming tonight, so I will see them tomorrow on Jeremiah's birthday!

I'm working on a plan for self-care. It does really have to be deliberate, because it's impossible to get it in if you don't think about it. I visited the roof garden last night, and that's nice. My plan is, the next time a volunteer comes in and says would you like me to watch Grace so you can go do something, I'm going to go up to the roof garden.
Posted by Heather Daley on February 12, 2024, 6:08 pm | Read 217 times
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I'm glad she's managing to keep some food down. I hope it lasts.

Posted by Kathy Lewis on February 12, 2024, 6:27 pm

Yes, take care of yourself!

Posted by Kathy Lewis on February 12, 2024, 6:30 pm

Yes, get those moments! Praise God for no throwing up, and we will pray that the ng goes well.

Posted by Michelle Rohrbacher on February 13, 2024, 2:39 am

Have you ever tried knitting/crocheting or other hand crafts? I find those meditative and easy to do while listening to a book or scripture or even while talking with a little one who is playing. It feels purposeful.

Posted by Serina on February 14, 2024, 8:24 am
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