I woke up at 6AM because it turns out that is when the hospital does weekly generator checks which involves the power going out, which shuts off the ventilation fan briefly and triggers these color changing lights (that we didn't know about previously, see below), and so the nurses run around to turn off the lights in everyone's rooms. Seems crazy to me that the test is scheduled like that. I have thought multiple times that Boston Children's Hospital should hire my company, Medallia for patient and employee surveys, because there are a handful of obvious things that all patients and employees know, but the people in charge must not, because they could save money, make the hospital a better place for employees and for patients and generally make things more efficient.

Since Grace was able to tolerate the meds last night with partial doses, spaced out and separate from meals, I had a plan for the morning, which involved waking Grace up a little earlier than she might have if I was completely quiet, and she got up at 7:30 or so.

I asked to have the meds delivered early, but when the nurse walked into the room she was holding the two vials and Grace was fixated on them and threw up 10 seconds later.  We cleaned up and she drank some water and then asked for orange juice. I got her some Ativan via IV, and then while talking to the nurse about my plan for scheduling the meds, which was a little different than what the computer said, Grace was listening and threw up again, so we'll need to be more careful about talking about the meds in the future. 


We went out to rounds with the doctors and verified that we can move the daily meds around a fair bit, though staying close to every 24 hours is preferable and I asked about a priority order if she can't get all of them in.

I got Grace to drink the highest priority med, fairly unhappily, but she kept it down and then she had breakfast pretty late (the hospital kitchen forgot my meal again, so I ate Grace's leftovers).

She had a couple queasy times this morning, and they have put her on regular Ativan along with Zofran that she was already taking.  We'll see if it helps, I think it either isn't enough or she needs something else.  They don't seem to care too much if she misses doses here and there, but I suspect it will be more going forward.

The laundry has been broken on our floor the last couple days and due to the vomiting, Grace needed laundry today, but I discovered there is a second laundry room on the first floor, so did the laundry there. I wear slippers in the hospital (Thanks Peter Venable for those "worn out" slippers you gave me probably 15 years ago. A nurse questioned how much longer I was going to wear them, but I think they just need some stitching and they'll be good for quite a while) but when I went to the first floor in my shorts and slippers and others are coming in from the outside, must make me look a little out of place.  However, I decided I must be a veteran here because a lady, who turned out to be deaf and I didn't realize that originally, came into my elevator, but then it was her first day, so she didn't know that some elevators don't go to the 4th floor, so I was trying to explain it, but ended up like all of the employees and just walked her to where she needed to go, because directions are too complicated.

On the other hand, I only just realized today that some elevators are marked "service only" in fairly small writing and still have typical public facing signs, so that might explain how sometimes I end up in strange places because they aren't marked that well, and aren't particularly hidden from the public view (and are the obvious choice when leaving our room).

In my travels, I ran into a pair of clowns from the Laughing Squad and invited them to come up and do they came a while later and Grace didn't quite know what to make of them, but they did know some sign language and so we did some signs back and forth and looked up some more animal signs that I couldn't remember and that Grace wasn't volunteering.  The clown thought it was funny that after Grace stared dumbfounded for a while, smiling occasionally that then she went back to eating her breakfast like having clowns in your dining room was a perfectly normal thing. I suppose I should have said that she has 8 and 10 year old brothers, so perhaps she is used to it.

I also met a guy who runs the hospital TV channel, which does various game shows for the kids and I verified that 6th floor siblings can come (they have a sign about immunocompromised patients) so perhaps our kids will like to go to the TV studio when they are here sometime. 

She is sleeping now, and hopefully I'll be able to get her to drink some meds when she wakes up.

Heather and Faith are on their way and there is a Chinese dinner at the resource room tonight (they do special dinners for caregivers various nights).


Posted by Jon Daley on February 7, 2024, 12:24 pm | Read 849 times
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I forgot to write about the colored lights. In the Dana Farber waiting room, there are lights in the front that cycle colors by fading in and out and Grace liked to watch them and exclaim when they changed.
It turns out we have the same thing in our room and the light switch labeled "on, off, comp" that didn't appear to do anything controls them, or rather, enables a keypad on the opposite wall to have lots of different choices for cycling colors. (I still don't know what "comp" means, perhaps it means controlled by the computer/TV which has a full keyboard remote as well as an Xbox controller, but we haven't really used it, so I'm not sure about that part).

Since that switch was turned off, the nurse was unable to use the keypad to turn off the colors this morning during the generator test.

But, now that it is on, Grace sat and played with the keypad for quite a while, though the color cycling (and perhaps Grace's vomiting before) made me feel nauseous after a while. But she had a lot of fun with it.

Posted by jondaley on February 7, 2024, 1:06 pm

I also forgot to say that though Grace didn't interact too much with the clowns other than smiling and laughing occasionally, she did sign "again" when they left and the clowns appreciated that.

Posted by jondaley on February 7, 2024, 1:07 pm

Grace is in our thoughts every day. So is her family!

Posted by Susan and Alan Davis on February 7, 2024, 6:18 pm

Praying for you.

Posted by Margie on February 7, 2024, 11:09 pm
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