Sort of. Rylie and I checked in at the clinic at 9:10 this morning, then waited with a room full of other patients wanting to get their infusions before the holiday. After an hour and a half of waiting (Rylie in her stuffy mask--no fun), I asked if we could go back to the RMH until the afternoon when they might be less busy. Since Rylie was having a slight melt-down due to getting up at 4:30 and not getting to nap promptly upon request, the nurse thought that would be a good idea. We went back at 2:00 this afternoon for Rylie's new blood cells after a nap for both of us.
There's not too much to report except that Rylie is doing better and better. I think getting out of the hospital is doing her a world of good. She's showing signs of not needing the O2 all the time now, but we still need to monitor her if we don't have her hooked up to oxygen. Rylie had almost another jar of baby food today--sweet potato and chicken dinner this time. An old fav. The nutritionist told us that Rylie has to be eating at least 800 calories (they'd like to see her eating more like 1,000 to 1,200) before they'll try taking her off of TPN. That's a lot for her even before transplant, but I know she'll be able to do it when she's ready. I'm looking forward to the day, because it will be nice not to have Rylie hooked up to a bag of nutrition for 12 hours every night. But the doctors are not pushing Rylie to get off of the TPN yet. We have lots of time to work on that.
Happy Fourth of July!
4 comments:
Slow blog commenters, huh? CONGRATS on the freedom! And that Rylie's considering the good foods again. It's wonderful to hear the progress. Hope your 4th allowed for a few moments of rest and maybe a glimpse of fireworks in the sky.
Several days past your
"Independence (sort of) Day". Hope all is continuing to go well there, Jordan is safely en route to KC, and you're getting the hang of this new phase. Thinking of you this windy, warm Sunday afternoon. love and prayers. L&B
This was great news to read on Monday morning! Hope all has continued to go well and that you're all starting to get used to the "new" routine! Trust you were able to see a few fireworks and celebrate being together. Rylie-you just keep working on those apples/blueberries and the sweet tater's and chicken....yummie!!!! Love and hugs!
Jo & Leonard
We're so excited for Rylie to experience life beyond those hospital walls again! We're praying that her appetite continues to increase and that she'll be able to be taken off the TPN soon! Remind me, how long do you all have to stick around MN for the daily check-ins and whatnot?
Sending lots of love and hugs,
Jenny (for the Wards)
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