We've probably said it before, and anyone who has been in a hospital for any length of time knows that any time someone says "soon" that means 2-10 hours, and "tomorrow" means 1-3 days, etc.  So, even though I posted here that it could be Friday, I've been telling myself Monday, though as the week progressed, I started to think it could actually be Saturday.

Have feed bag, will travel

She spent most of the day unplugged from her regular lines, and now has a small backpack that contains her formula pump.  She was able to walk fairly well with it, but occasionally takes a step backwards to compensate for getting pulled by the weight.

And lots of things have been going really well this week.  Weaning off of morphine went a lot better than I expected, and the switch to all of her meds via her nasogastric tube went significantly better than I expected - she vomited once or twice per day for most of the week, but not really related to obvious pain, position or medications, so I don't really know why she is vomiting, but it is less than I expected (tablespoons at a time, if you really want to know...)

In fact, I don't know the exact times, but yesterday, she probably went 24-30 hours without vomiting at all.  But, today, they tried to switch her off of IV fluids and put all of the liquid into her NG tube, and that didn't go that well at all.  It is possible that if we spent all day going really slowly, maybe she could tolerate it, and the nurse and I talked about reducing the concentration of her food and putting more water in, and then upping the feed rate, but I'm not sure that is a good idea, though we might want to try that tomorrow.  They want her to get around 35 ounces (that's my math, but I think it is correct) of fluid intake per day, which includes the meds (just a couple of ounces), her food/formula, which is ~24 ounces, so that just leaves ~8 ounces of water, which you'd think wouldn't be too hard, but she's never been a big drinker (or eater), and when you put the water in a syringe to pump down her NG tube, it is a surprising amount, and it expands the tube a little as it goes down and also she can detect the temperature change), and so will complain sometimes if I push it too fast.

So, she vomited a lot today - starting off this morning with the most she has done in a long time, and then little bits throughout the day. Because of the vomit this morning, they turned off her feed pump, and so then she was hungry at lunch time and ate a bag of potato chips (a huge accomplishment...) and a few bites of some other things.  Her food was turned back on sometime in the afternoon and we went out to the playroom around dinner and that's when we started to talk about the quantities of water, and so she drank a little, and then I started putting it into her tube, and I got a few ounces down successfully over a half hour or so, and then I had the bright idea to let her push the syringe, which she likes to do anyway, and I figured she can control it better than I can, since she can feel it, and I have to watch to see when she starts itching her nose or getting watery eyes or asking for a Kleenex, etc.  She did fine for the first ounce, pushed it in nice and slowly, but then slammed the next ounce in over a couple seconds and promptly threw it up. She said she did learn from that experience and would go slower next time...

She ate a few bites of pizza (the nurse thought it was funny that I recorded it as 8 cm2, I'm not really sure how they do all the estimating, and since these particular bites actually could be easily measured, I figured I might as well).

Today's nurse was new to me - she is a per-diem and just works a shift or two a week, so we hadn't met before, but we had a lot of good conversations, she said, "I'm glad when the patients are 'human' and want to talk."  Her husband got an engineering degree but pretty soon after graduation wanted to become a pilot, so joined the Air National Guard, so we talked about that some.  Starting with a bachelor's degree does make boot camp a lot simpler; I think she called it Captain School, and referred to it as "boot camp lite", which does seem better, but also expensive to get a bachelor's degree just for that reason.

If you are wondering why I'm even talking about this - Noah has been considering the Air Force and/or the Air National Guard, as going directly to a typical flight school costs $100K in one year without any opportunity for grants, and doing it while getting a bachelor's degree, at least spreads it out over 4 years, but the cheapest place we have found costs $160K after grants, so seems equally hard to manage financially.  The FAFSA changed this year and as far as I can tell, have a bug in their income calculator (they require you to give them access to the IRS's records directly, and they apparently took either the 401K rollover or a IRA conversion that I did last year and counted it as income so say we're not eligible for any federal grants or loans, and are so far behind in responding that they just replied yesterday to my email from a few months ago, and they just said, "we don't know yet, we'll let you know after we send the results to the colleges".

Our window nook

Here is a picture of the infamous window nook; Grace is leaning on the window to the left, and the mirror on the right reflects the courtyard light and view into our room.

The nurse just came in and turned IV fluids back on since she wasn't going to be able to hit the fluid goals for today, and we both agree that Grace isn't going to get discharged tomorrow, so we don't need to try to push it.  Besides the fluid issues, they are having trouble getting her magnesium levels up high and stable enough, and also they can't get her dosage of her cylosporin correct - that it an immune-suppression drug that they check levels every couple days usually (checking it every day right now) to keep her immune system suppressed, but not too suppressed, and so that is a number that will continue to play with over the next months (or year, I'm not sure when she stops taking it).

One interesting thing we learned at the discharge class yesterday is that because her immune system was replaced, she basically is starting over from birth, and so has some passive immunities like a baby does direct from her mother or breast-feeding, but she will need to get re-vaccinated for the regular baby vaccinations. (I don't actually remember if she was vaccinated for anything, since we were trying to figure out the "allergies" during the time when one would normally get vaccinations).  I think the earliest one is in six months, which is part of the reason for the isolation, that she will be like a newborn, who can get sick easily from common diseases that the rest of us already have a decent immunity to.

Posted by Jon Daley on March 15, 2024, 6:34 pm | Read 1444 times
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I've been hearing horror stories about the FAFSA update. Apparently they were supposed to have started the process several years ago, but they did nothing until the deadline was approaching and then tried to hurry.

Posted by Kathy Lewis on March 15, 2024, 7:24 pm

My cousin Frankie had to get all his infant vaccinations over again after he went through a stem cell transplant and said it was pretty funny when the nurse handed him pamphlets about it that were titled things like "what to expect from your infant's polio vaccine".

Posted by Barbara on March 15, 2024, 7:37 pm

I had to smile at the story of you talking with your two year old about not pushing the syringe too fast. "That is exactly Jon," I said. Porter said he could hear you clearly in his mind. Go, Daddy!

Posted by Linda Wightman on March 15, 2024, 9:57 pm

What a sweetheart Grace is! Continued prayers for all of you!

Posted by Jennie on March 16, 2024, 11:42 am

Look at her sweet little face! For some reason, a toddler in a backpack is always adorable. Praying she can get all the list items checked off to go home safely soon!

Our nephew is in studying to be a pilot at U of North Dakota, and we also went to Western Michigan University (which has a notable flight program), so we know how expensive it gets! Hope Noah can find a way to make it happen.

This may not be what Noah is looking for, but this is nearby(ish) us and a friend's son studied here. https://smat.edu/about-smat/

Posted by serina on March 16, 2024, 1:32 pm

Thanks Serina, I'll let him know.

Discharge might happen tomorrow, but more likely on Monday.

Posted by Jon Daley on March 16, 2024, 1:43 pm
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