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.

Posted by Heather Daley on March 1, 2024, 10:50 pm | Read 43 times
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I removed the oxygen in the morning since she was awake and didn't need it and having an additional tube hanging from her face was annoying, and I went to turn the valve off, and noticed that the oxygen was just pumping into the air. The reason is that they had moved the hose from one valve to the other, but the nurse changed the original valve in the middle of the night, not noticing the hose had been changed.

When I mentioned it to the nurse practitioner, she said she had turned the correct up to 1L in the morning, but apparently, it isn't very accurate, because it had gone back down again.

Another interesting thing is that on the ambulance, we consider anything less than 2 liters per minute to not really be anything, and so sometimes a patient might request oxygen, but the provider doesn't thnk they need it, so will turn it on to 1LPM and report that to the hospital, who will then typically not give the patient any oxygen when they arrive in the emergency room.

However, in pediatric usage, they have much lower settings than 2LPM - starting a half liter per minute is common, and .12, .06 and even .03 LPM. I asked about it, and a few people have confirmed that even tiny doses can be useful.

Grace has been fluctuating between .5 and 1LPM while she is sleeping (and when she pulled off the nasal cannula when she was sleeping last night, her SpO2 saturation did go down below 90%, so it is effective. In general, she doesn't need it when she is awake.

Posted by jondaley on March 2, 2024, 7:11 am

Mom stayed overnight last night, and I haven't gotten an update, but they called after I got to the apartment to say that they didn't think an ICU visit was going to be needed tonight either.

They had given her a nebulizer treatment of Racemic Epinephrine (her heart rate was already high (140BPM) and so I asked if that was a concern, and the nurse said no, Epi doesn't affect the heart rate like Albuterol, which I was pretty sure was incorrect, but figured it would be okay. Her heart rate spiked to 163 or so, causing a monitor alarm, and the nurse remarked, "Oh, it did go up..."

But, her heart rate, breathing rate and breathing sounds all came down within ten minutes or so, and so that was good.

Posted by jondaley on March 2, 2024, 7:14 am

We should meet the new attending physician today, who will be the physician over the weekend and continuing on through the week.

I had mentioned to a few providers that my relationship with the prior attending wasn't going well, and I assumed that someone would mention it to the attending (she presumably already knew, since we had gotten into some "vigorous fellowship" (a phrase from Dr. McGlynn from the Church of the Ascension) over the past two weeks, but apparently, no one said anything (or she didn't hear them either), because when I asked who the new attending would be, and confirming that the current one was leaving on Friday, she joked, "are you counting down the days?", but was caught off-guard when I said yes. She asked to talk about it, but I said that I was too stressed to talk about it then, but to come back next week.

To her credit, she did work much harder after that, and so we had a much better day on Friday and she was much more careful in her language.

We have heard from others that they have had similar problems (another patient's mom thought the problem was with males), other female medical providers have also had some communication issues. I was reminded of House MD", who is quite arrogant, but it works for him, because he never makes a mistake, and always diagnoses these rare diseases within seconds of seeing the patient and everyone thinks he is nuts, and he says, "well, do the test if you think I'm wrong, but I'll start treating her, and you'll catch up in a couple days", and it always turns out he is right. But, that only works (and arguably, still isn't the best way to communicate with others) when you are never wrong.

Posted by jondaley on March 2, 2024, 7:20 am

Many thanks for the update!

Sometimes there is an advantage to having family six time zones away.

This is why so many people with hospital experience have told me that a family member's presence is so important. Things happen. Like the wrong food being delivered to a person with a deadly food allergy. Like the wrong orders being given by a new doctor who misses something important in the chart. Like orders being carried out wrongly. Things that family members are more likely to notice, and need to have the strength and courage to question. Very scary!

Posted by Linda Wightman on March 2, 2024, 7:34 am

Praise the Lord for engraftment! May her new immune system get to work healing her liver and everything else!

Posted by Linda Wightman on March 2, 2024, 7:34 am

Thanks again for all of the updates. Yesterday I asked my fellow Rotarians to keep you all in their thoughts and prayers.
Of course I will too.

Posted by Joyce on March 2, 2024, 8:02 am

They do reviews on the shift changes as well, which has occasionally catches errors as well. The nutritionist was working to reduce the amount of intake fluids the other day, and made a new "recipe" for her food, which is more consolidated. The new bag was installed, but they forgot to update the rate to a slower rate, and it wasn't noticed until the next shift change. It isn't that big of a deal, but good that they noticed it.

Posted by jondaley on March 2, 2024, 8:47 am

Mom sent an update from overnight as well:

The nurse was just in to do labs. Grace seems like she is sleeping peacefully now. They were in a lot during the night. Sometimes her oxygen was low and once anyway the heart rate was up.

And they drained more fluid I think twice during the night. If it beeped during the night I slept through it. The nurse just said her rates are all good and that she is better than she was yesterday.

She fell asleep holding my hand last night although she gripped it and didn't let go until she fell asleep.

Posted by jondaley on March 2, 2024, 8:51 am
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