Grace had a great day today, despite staying up until after midnight (I went to sleep, but I asked the nurse in the morning, and she stayed up reading her new book and trying to not let the nurses check her oxygen levels since that would involve taking away her light...)

She came to rounds in the morning and went to the playroom and painted and while we were there got a package of stickers and we went back to the room to use the stickers.  She also got some new books that she has been requesting to read all day.  She even ate a little bit of Jello, though did vomit it up later.

Good play day

Heather arrived later than she planned due to a miscommunication at home and some much needed cuddling time.

We got a couple things fixed by hospital staff in the new room - a hinge in our bed, the hot water pressure, the fire safe (we don't really need the safe, but it is another shelf that could be used), and that was all successful.  But, then I mentioned that the positive pressure system didn't appear to be working (so our room was gaining air from the hallway, rather than pushing our air out) - I had noticed it a couple days ago, but forgot to say anything.  The nurse verified that it was incorrect and the HVAC guys came up to look at it, adjust pressures, etc. but weren't able to fix it easily.  After I left, they moved Heather and Grace to a different room so they could turn off the system and work on it.

The new room is much smaller and they hope to move us back tomorrow, though they did move all of our stuff, which seems like a lot of work if they expect us to be back in the room tomorrow.

I did walk to the new apartment to check it out, and see what the parking situation looks like.  The owner offered us a paid, reserved parking space, but it looks like there will be street parking that isn't too bad.  We typically don't use the parking very much, since we have free parking at the hospital.  One thing I hadn't considered when searching for an apartment was the altitude, and strangely enough, an apartment on Parker Hill Ave in the middle of the Mission Hill district, is actually on a hill and has a significant uphill walk from the hospital, but Heather will hopefully be able to take some rest breaks on the way.

Grace's weight is under 12kg, which is one of the doctor's goals and her ANC (absolute neutrophil count, we've often referred to this as her white blood cell count), was at 1230 this morning.

I forgot to say yesterday that she had a chimerism test (which tests to see Faith vs. Grace cells) and she measured as 97% Faith, and I would have thought anything under 100% was bad but I don't know anything about that and the doctors were happy and the nurse was surprised that it was that high already.

Posted by Jon Daley on March 6, 2024, 11:34 pm | Read 407 times
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Comments

Thank you for keeping us posted. We (and our church) are praying for Grace.

Posted by Eric Feustel on March 7, 2024, 7:24 am

Glad to hear the good report. Love to you all!

Posted by Dstb on March 7, 2024, 7:49 am

New apartment?

Posted by Linda Wightman on March 7, 2024, 8:50 am

Great news. His is goodO. It was good to see Heather yesterday. Love you all

Posted by Donna Houghton on March 7, 2024, 12:22 pm

I commented this on Linda's blog, but from what I remember of the chimerism test, the highest it can report is >97%, so I'm guessing that's what it showed! I'm working at Children's on Wednesday, so will try to come visit in the evening.

Posted by Layla on March 11, 2024, 3:40 pm

Norma's chimerism test is also 97% her sister, and they are super pleased with that. 95-100% at this stage is really really great.

Posted by Jen on March 13, 2024, 6:10 pm
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