Daley Ponderings

We are settling into our second week of being full-time in the apartment.

Our schedule consists of:

• Adminstering meds 3 times a day and then washing all of the syringes and straws and flushes
• Keeping her central line clean twice a day (Boston Children's says cleaning twice a day is good, Dartmouth says once a day is good, so sort of interesting - there is a tradeoff of cleanliness vs risk of opening the line and cause an infection)
• Cleaning up small amounts of vomit once (or more) a day
• Changing and cleaning up overflowing diapers and the corresponding washing of clothes and sheets
• Keeping her formula pump running and her NG tube not blocked (it's only gotten blocked twice, related to the cyclosporine, which is a thicker/stickier med)
• Reading lots of books
• Meals - Grace doesn't eat much, and I've been missing cooking, so I've cooked a few meals, and use DoorDash otherwise
• Miscellaneous phone calls to insurance and medical providers
• A fair bit of sleeping
• Regular household chores

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Why does she have so many overflowing diapers?  Her formula pump puts in ~700ml and she is supposed to take in 300ml of water/fluid in addition.  We had been putting that into the pump as well, though the nutritionist said we could skip that, though I'm expecting the doctors to not be happy with her electrolytes tomorrow - she had a higher concentration of various electrolytes last week, but she is drinking more - she often asks to have a drop of hot sauce when I have some, and though she says she likes it, that triggers her drinking a few ounces of water or milk, so I try to get her to eat some hot sauce a couple times a day, so we'll see what the blood test says.  Transplant patients do need more calories than a typical kid, so they want her to be getting as many calories as possible.  The above numbers are the minimum amounts that they want her to have.  This picture was taken approximately 2 minutes after she insisted she didn't need a nap after lunch.

I can't remember if we said it before, Grace really liked the nurses' badges that contained various cards, and also often had toys on them, and so they would let her play with them, give her the toys, (one nurse even loaned her the whole badge at one point - presumably not allowed to give patients access to the drug room, etc.)  In addition, she was always so helpful when the clinical assistants were getting her vitals (holding the blood pressure dial, putting the O2 sensor on and off, taking the blood pressure cuff off, removing clothes and moving to give them better access to listening to her lungs, etc)  When we were leaving a nurse made a badge for Grace since she'll be a nurse someday.

We are trying to figure out what 9-12 months of isolation looks like; they had some explicit rules (though the discharge class teacher did call them "best practices" and said, "there isn't any science behind any of these recommendations and we don't know if they matter or not".  Grace is likely to sleep in the kids' room at home, which means the same room as the snake, and they are pretty particular about reptiles, though they are mostly concerned with touching, cleaning them, etc.  But, we are thinking we will probably move the snake into another room.  But, one task that we do is bring the trash and recycling to the trash room down the hallway, and Grace happily dragged the recycling box down the hallway and then carried the empty box back (she is unhappy in the picture because I made her stop putting the box away so I could get a picture).

This morning, she got out of bed herself, and was trying to maneuver her pump around the corner (it requires lifting the tripod, so she can't do it on her own) and in the process ended up vomiting all over the end of the bed, resulting in a lot more cleaning than usual, and also got some on the tape that holds her NG tube in place, so I replaced it this evening.  In the hospital, they use two people to do the procedure, but I was pretty confident I could do it on my own, since Grace is so calm, so I replaced it on my own last week, but tonight I had the inspiration to have her hold the tube in place (when it moves as she breathes it makes her gag, so it is helpful to have someone hold the tube in place while the tape is positioned.  She continues to live up her reputation as the best patient, and future nurse.

But, lest you think our schedule is full of only medical things, we do get time to play games and read books.  Tonight, Grace and I lay on the fold-out couch pretty cozily (when I said it was time for dinner, she brought the emesis basin with her - she has never done that before, so I didn't let her eat dinner until after she had drunk some water, and she never made it past an ounce or so, but she did have one french fry), so we had more cuddling time than usual after dinner.

Heather got to go Park Street last Sunday for Palm Sunday and the subsequent organ recital.  Grace and I watched the service online and I hadn't realized that we would be able to see Heather on TV!

  We have a clinic appointment tomorrow and we are going to ask about how long we need to stay in Boston - I think there is a disagreement among the doctors, so we will see what they say when asked formally.