Grace did well her first night. I had a harder time because it was like having a young baby - changing diapers in the night; she did go on the potty. Jon and the older girls dropped Grace and me off at the clinic on their way home.

Grace was not happy to be stuck in a clinic room. First thing, she wanted to go in the resource room to get a book. But she is not supposed to go in public places. So she's stuck in her isolation room for the whole visit. She even stood with her head against the door crying to go out. But we had the nurse bring her some books. Other than that, her visit was uneventful, They had anticipated giving her platelets, but her numbers were good, so they didn't. They did give her the last dose of the anti-nausea med that is supposed to last 7 days.

The plan was for us to catch an Uber back to the apartment, but the app was giving me an errror. Emotionally overwhelmed and sleep-deprived, I called Jon in tears. He was able to book a ride for me, and Grace waited patiently and that went without a hitch. (Much better than trying to book an airbnb for someone else.)

Grace and I got a much-needed nap and I felt a lot better after that.

Jon came back in the evening and took care of her evening meds and feeds so I could go to bed early.

In the morning, I was looking forward to a day at "home" doing "nothing" but got a lesson in "do not say we will go to this or that city..." When Grace woke up, we saw that her food bag was still full!  Her NG tube had clogged. Both of us tried to flush it with no success. Jon had a terrible time getting through to the right people at the clinic (and that mis-routing of request ended up getting escalated to superiors.) By the time the right person called back to schedule an appointment to put in a new NG tube, Jon had tried again and this time successfully unclogged it!  By the way, the nurse said "try Coke, we've had great success unclogging tubes with it" and Jon says that's the first time he's been in a store debating abbout the medicinal qualities of brand name vs. generic coke...

But after that, the day has gone well and been a good kind of relaxing while slowly getting settled. She has been eating and drinking by mouth more than before, even while her feeds are running. Oh yeah, I forgot to say she had a bout of nausea in the morning, but after Jon gave her the zofran, she's been better. We played video games with the younger boys. Jon took her for a walk to a playground in the afternoon. They had fun and I got a nap!

Jon also went shopping and bought salmon, which he made for dinner. He has been missing cooking. It was yummy and Grace ate a good portion. We are slowly getting organized: clothes, medical supplies, kitchen/food.

There are definitely aspects of this phase that are hard so please keep us in prayer. Grace is now out of isolation with a baby immune system. She has another clinic appointment tomorrow and a bone marrow aspirate soon.

But it's good to be in a more home-like environment.

I'll do a separate post for pictures.

 

Posted by Heather Daley on March 19, 2024, 6:52 pm | Read 800 times
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Comments

This tells me how little I know about the immune system. I know a BMT leaves you with the immune system of a newborn (but without the boost given by the mother when in utero and through breastmilk). But she now has well-educated 15-year-old bone marrow. Doesn't that help somehow?

Posted by Linda Wightman on March 19, 2024, 9:13 pm

I'm not sure how it works. And I just realized that technically, she's still in a kind of isolation, just not the kind that restricted her to 6 West.

Posted by joyful on March 19, 2024, 9:22 pm

She is still getting immuno-suppressant drugs (I'm not sure for how long), and she also got more chemo after the transplant, though they called that "mild chemo" again, so I'm not sure how that is related.

A nurse told me that her highest risk of infection is from herself (I was asking about the risk of siblings catching something and bringing it home). Faith (and maybe Grace, I can't remember) previously had Epstein-Barr Virus, and I think another one, that isn't a big deal as far as normal people getting it, but it stays in your system forever, and so Grace has the virus hanging around in her system, and now that she is no longer immune to it, it could re-activate itself and cause problems.

Posted by Jon Daley on March 20, 2024, 5:27 am

Thanks Heather (and Jon) for the regular updates. You are all in our thoughts and prayers, and it helps to know the details!

Posted by Martha Douglass on March 20, 2024, 8:36 am
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