There may be a later update tonight, but it's my bedtime, and three of Grace's four brothers are visiting, so I don't really expect Heather and Jon to have time to write. But I can give you a little.

  • The attending physician rotates every two weeks, and most of them are great, but they are having problems with one; please pray for better understanding and communication.
  • So many of the people attending to Grace keep changing around, but their social worker and her "child life specialist" provide much-needed continuity and advocacy. I'm gaining more respect for these positions than I had previously.
  • Hospital volunteers, too, can be worth their weight in gold, giving parents much-needed breaks to attend to their own mental and physical health.
  • I am so grateful for Boston Children's liberal visitation policies. The opportunity for Grace to see her siblings is so good for her mental health, and good mental health, I'm convinced, is crucial for physical health.
  • Life is not all seriousness in this very serious time: Jon and the boys took the opportunity of their visit to spend the afternoon at Boda Borg!
  • Grace is struggling with pain, though morphine "pushes" perk her back up again. They had stopped the continuous morphine, perhaps a little too soon. The mere thought of that little girl dependent on morphine tears me apart. I have to assume the doctors know what they're doing, and I certainly understand that pain can interfere with healing. But I hope that she won't need it for very long.
  • Her ANC was up to 330 today, a good jump from the 100-200 it's been for several days. We pray that those new cells will get right to work healing her gut!
  • When she gets to 500 she will have reached the "engrafted" stage.
Posted by sursumcorda on Tuesday, February 27, 2024 at 8:59 pm | Edit
Permalink | Read 48 times
Category Pray for Grace: [first] [previous] [next] [newest]

Good to see those numbers rising! Do they expect the pain to diminish as she reaches that engrafted stage?

I'm glad Jon got a break with the boys. Everyone needs to take care of their mental health during this.

Posted by dstb on Tuesday, February 27, 2024 at 10:08 pm

A couple of corrections before I finish my post (which yes, I was too tired to finish last night.)

We had only reduced her continuous morphine, not eliminated it. And they fully expect to wean her off of it before discharge. Actually, that's a condition for discharge.

And technically, it's three days in a row over 500 that counts as engraftment.

They do expect her pain to go down once her new white blood cells heal up her body.

Posted by Joyful on Wednesday, February 28, 2024 at 6:57 am
Add comment

(Comments may be delayed by moderation.)