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Powered by LifeTypeIn addition to the drain being installed yesterday, yesterday was moving day. They have all patients move every month to allow for the room to be completely cleaned. From the few examples I've seen, that generally means moving to a nicer room, since they can pick the day when the move happens, and so we moved one day early to ensure getting a nicer room. The new room is at least 50% bigger, and the bed is double the size, and has a huge window sill due to an interesting architecture design that is hard to describe in person, so we'll have to get a picture of it. If they hadn't done anything with the design, the window would have been facing a wall or maybe a tiny portion of the garden. But, instead the installed a floor to ceiling mirror diagonally, and then a left-facing window, with a window sill that is probably 6 feet long, and 7 or 8 feet tall. The result is that there is another "room" that I think with some pillows or blankets, might make for a nice little nook to hang out in behind the bed, so we'll have to try that out. It probably won't work for Grace, due to all of her connections to the pumps, but I expect the siblings will enjoy it.
The last couple of days have been tough, but today is looking up. At 2:00 this morning, Jon called me to say that her breathing was worse and they were considering bringing her up to the ICU. I called my sister, she prayed for us. 45 minutes later, Jon texted to say that they had increased her oxygen and her breathing was better, so she was not going up to the ICU.
In the morning, Jon discovered that they had actually turned up the wrong oxygen supply, and she was getting the same amount that she had been. So that means that God helped her breathe last night despite the nurse's mistake.
Jon also had a good last rounds conversation with the doctor that he'd been having trouble communicating with. He had some good conversations with nurses about beeping and things, and despite being up partly in the night with the ICU investigation, he got a good amount of sleep. So that is an answer to prayer also.
This afternoon, they put in a drain to her abdomen, and have gotten out a significant amount of fluid so far (I think over 100ccs.) She has been sleeping a lot, so it's hard to know how that's affected her, except that it seems like sleeping peacefully is probably a good thing and that she's more comfortable.
Today is also the day of official engraftment! Her ANC was up to 700 today. Yesterday, there was one reading that was 480, but because they took another reading that was over 500 it still counted, so today is the third day.
Please continue to pray for wisdom about her liver, as we're still not sure what's going on with that.
I've had a lovely time at home, including many conversations, a game of Wingspan, and a beautiful hymn sing. I'll be bringing Faith back down with me in the morning.
Grammy is staying with Grace tonight, Jon is sleeping at the apartment. Grammy helped him pack up the old room and set up the new room. Every 30 days, they need to do a whole thorough room cleaning, so we needed to switch rooms. It is bigger than our old room.
The last several days have been back and forth. I’ve started several posts in my head, and then they end up changing. The weekend doctors cancelled the stool studies, then the attending on Monday re-ordered them. Jon had some very frustrating conversations with the doctor, but an encouraging one with the social worker. Also, conversations with nurses and clinical assistants about ratios of pee and poop in potties and diapers. But before they actually put her on precautions, Grace got some time in the morning in the playroom with PT, who was happy with her strength for squatting and getting up and down and reaching.
I also forgot to post this picture of her walking with her shopping cart, from a couple of days ago.
Once again, it was good for me to visit home. This time, I brought Joy back with me. We left later than I meant to, for various reasons (one being the second batch of Victory tshirts came in!) so we had a bit more traffic in Boston than I have yet driven in. It was stressful for Joy, I think, but I am getting used to it.
Grace was so happy to see Joy! They have a secret handshake that in the past Grace has sometimes rather reluctantly done. But this time, she volunteered all the pieces, including the last one, and that made Joy happy, too.
Grace had a great day today. She went out for a walk, wasn't even too upset when Heather left for Hillsboro, waved at everyone as we walked down the hallway. (She was especially adorable today because she brought a toy vacuum cleaner instead of her normal shopping cart, which is useful for stability as well as bringing things everywhere). Various staff members thanked her for cleaning up the hallway)
Jon wrote today:
When I said it was a "bad day" the other day, a nurse corrected me and said "good moments and bad moments".
This morning was good and she played in the playroom for quite a while. She did throw up after eating. But has continued to ask for food, and hasn't thrown up yet...
She looks brighter than she has been the last few days. Her white blood cell count has gone up from zero, though the doctor stopped by to chat since we didn't see her this morning. She said it is common for the white blood cell counts to "flicker" as best as I can figure out, they measure the non-active white blood cells and so if they are out working on healing some area of the body, they don't get counted, so if those 30 get assigned to go work tomorrow, her count could go "down" but that isn't mean anything bad.
So, in short, it is possible this is a turnaround, but it might go up and down for a little while still.
I walked home late Monday night, because there was supposed to be this big snowstorm. Jeremiah was already asleep, sprawled all over the bed. In the morning, it was only raining Jeremiah and I had leftover pizza for breakfast, and we walked to the hospital in the rain.
The nurses and child life had gotten Jeremiah a poster and some balloons, so that was fun. We also had some birthday stuff in a package from a friend.
He played with Grace in the hallway until somebody told him he wasn't allowed to be in the hallway. Grace enjoyed being out there again.
However, then it was time to put in the NG tube. As per usual, she did a great job. But she really doesn't like having it in. Her nose runs, and it moves when she swallows. She threw up once, the first time she ate something with it in. But after that she was able to eat.
Her temperature is slightly elevated, but not quite a fever level. Her blood pressure is also slightly elevated, and overnight her magnesium levels were low. She slept all the way through like usual, but now she's just cuddling in my lap. She is not feeling very well, not feeling like herself.
Jon and Jeremiah are planning a surprise for me that they're going to bring over from the apartment. Then Jeremiah and I will go home. Hopefully I'll be able to get a nap, since I woke up to lots of beeping throughout the night.
Days +2 and +3 have been full of desire for eating but not the ability to keep it down. Also, bare bottom and oxygen blowing has been keeping the diaper rash from getting worse, and it might even be a bit better. She has lots of diarrhea. She has been sleeping a lot. She had a dressing change today and there is a bit of irritation where the tube leaves the dressing. The nurse moved the tube for the new dressing, and hopefully that will heal up.
Faith is steadily improving and is planning on going home with Jon tonight. I'm pretty tired. There was an alley party last night, which thankfully did not wake Faith. But it did wake me. Today is Jon's birthday. This year, our February birthdays will be quite different from normal. He was able to go to Park Street Church this morning, which was good.
