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

If the email subscribers haven't figured it out yet - this is the last sentence that you'll see in the email, but there is more content (and pictures this post!) by clicking the link below.

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.

Posted by Jon Daley on March 26, 2024, 9:13 pm | Read 95 times
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Thank you so much for your updates.

Posted by Linda Wightman on March 26, 2024, 11:03 pm

Praying that Grace is able to bulk in those extra calories!!! With her allergies all cleared, does that mean she can have ice cream every night now? Praying also for clear answers on the duration of your Boston-life, and the logistics for how to function as a family once everyone is HOME again!
We love you all!

Posted by Michelle Rohrbacher on March 26, 2024, 11:09 pm

Yeah, she can eat anything she wants. She typically doesn't eat much of any one thing, but will often ask for lots of different kinds of food - she has always been a person who wanted all of her food lined up and she would take one bite of each thing and pretty consistently go round-robin style.

These days, there is more that doesn't taste right (chemo side-effect), but fortunately, she is still willing to keep trying - apparently, lots of kids give up on eating since it doesn't taste right.

She hasn't been too interested in ice cream (or milk shakes - that was one thing the nutritionist really wanted her to eat when admitted, to get more calories per bite.

She does eat cashews at most meals. Heather does wonder if there is a dairy sensitivity still, but it isn't anywhere near as bad as it used to me. She does prefer almond milk over cow milk currently.

Posted by jondaley on March 27, 2024, 1:18 am

How did Grace react to seeing Heather on TV?

Posted by Kathy Lewis on March 27, 2024, 1:26 am

She was happy to see her, but I think I probably thought it was more fun than she did.

Posted by jondaley on March 27, 2024, 7:15 am

I love, love, love that cuddling picture!

Posted by Joyful on March 27, 2024, 7:22 am

She had a big breakfast today, so I'm working on counting calories, so just documenting for later.

Formula is 237 ml and 1 kcal/ml (everyone measures in kcals, the formula bottle is just being more precise, right?), so their caloric goal for her is 720 kcal/day.

The pasta (Shaws generic brand) is 200 calories per half cup (dry), and by my count, there are 280 pieces per half cup. So, even her "big breakfast" of probably 20 or 30 pieces, was 14-21 calories.

She asked for an English muffin, but didn't even touch it today - usually she does eat part of it at least.

She did eat 5 or 6 cashews, which I'll have to calculate the caloric content later, since we are now headed to the clinic.

Posted by jondaley on March 27, 2024, 7:45 am

So thankful for each update, helping is to pray with knowledge. I was so happy to cross paths with Heather & baby yesterday in Hillsboro, and to sing a Keith Green song with Jonathan, and to give hugs all around. Praying on!

Posted by Pam on March 27, 2024, 7:49 am

I sure hope your apartment has a washer and dryer.

How was clinic?

Posted by Linda Wightman on March 27, 2024, 1:15 pm

Thank you for the updates! We are continually praying for you all.

Posted by Jennie Weaver on March 27, 2024, 1:23 pm

so love the updates....and I marvel at all of your strength! All being each one of you....you are an inspiration! Love to all of you today and always.

Posted by Denise on March 27, 2024, 2:37 pm

Thank you for the updates. I hope it won't be too long before you are able to go home. Love to all.

Posted by dstb on March 27, 2024, 5:32 pm

Thank you for the updates. I also love the cuddling picture. Continuing prayers for Grace and the family. God is good. God Bless

Posted by Donna Houghton on March 27, 2024, 8:35 pm

The clinic was okay. She needed fluid, which I expected and the doctor said she needs at least 325 ml of water every day.

She was borderline on her hemoglobin count, so they did some red blood cells as well, which takes three hours.

They lowered her cyclosporine and magnesium prescription a little bit.

I just counted cashew calories, approximately 9 calories each.

Last night she gagged on her foam toothbrush and vomited up her NG tube, but fortunately, she had most of her formula for the day, and I think with her breakfast and lunch, covered her minimum calories for the day. So we have another appointment today to get a new one.

Posted by jondaley on March 28, 2024, 10:09 am
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