Wednesday, March 24: Day 27, Looking up

Today’s lab and clinic was more encouraging than the last few. We stopped by the wound clinic and learned how to care for Dan’s incision site (details of which I won’t go into except to say it just requires more attention than it did last week). Monday, the surgeon thought it looked superficially infected, but today the nurse at the wound clinic thought it looked pretty good. We will continue to visit the wound clinic once a week or so until things are mostly healed. I feel more confident in how to care for the site now that I’ve had actual instruction. They also provided us with specialized supplies — one item was interesting to learn about: it’s called Kaltostat and it’s a fibrous spongy material made of seaweed and helps to protect the site from infection. Dan and I couldn’t decide if it was high-tech or low-tech — maybe nature-tech. The nurse there encouraged Dan to eat lots of protein, vitamin C and zinc – all to promote healing.

Dan’s creatinine is down a bit today, which is good. It probably won’t go any lower – everyone’s levels are different because of the way individual bodies process it. The more muscular you are, the higher (generally) your natural creatinine level is — although if it gets too high then the docs will want to check you out for kidney dysfunction. (The creatinine itself is not toxic or anything: it’s just an indication of how well your kidneys are flushing it out of your body, because your body continually produces it.)  Dan’s got as high as 10 pre-transplant, and it’s now below 2. The doctor told us about a professional basketball player that he knew about with a pre-transplant creatinine level that was higher than 19, so you can see how it can vary from person to person.

The doc surprised us today by announcing that Dan only needs to return to the lab and clinic once per week — and we were previously at three times per week! So that is very good progress. Dan is much relieved, as the higher creatinine levels that we saw last week (when he was dehydrated) could have been an early indication of kidney rejection. At 6-8 weeks after the transplant, Dan will go in for a kidney biopsy – this will tell the doctors if there is any sign of rejection that might not be visible in the blood tests.

Oh, and I almost forgot: the episode of gout is over. No more pain or stiffness. Don’t want to see that again anytime soon!

In other news, tonight Charlie basically told me, “I’m an inventor, mom. Why doesn’t anyone let me do experiments?” So I told him he could pick out a couple of experiments from his chemistry book and we’ll do them this weekend. He replied that he wants to make up his own experiments. I’m a bit afraid of what he might come up with – but most importantly I’m wondering if I will be able to modify the initial experiment design into something safe and easy with materials I might actually have in the house, while not upsetting yon young Edison.

Before he went to bed, he wrote a short story on a piece of paper. This is how it reads: “Once upon a time there was a mom. She had 3 childrine. Their names were: Betsy, Hanna, and Rabeka. They went out into the woods! And they stead there for the rest of their lives. The end.” I asked him if it was a good thing or a bad thing that they stayed in the woods, and he said it was good because they loved the woods. He described himself the other day as a nature-lover, and after asking me what being addicted to something means, he stated that he was addicted to nature. What an amazing young man we have – we are so proud of him. I’m so happy that he isn’t afraid to ask us anything, and he really listens to the answers and is so curious to learn. I can’t wait to see if he does turn out to be an inventor, or an engineer, or a teacher, or ?

Short story
Short story

This is a picture that he drew (by making sure he had the correct crayon for each shade) right after Dan taught him the “ROY-G-BIV” mnemonic to remember the colors of the rainbow:

Red, orange, yellow, green, blue, indigo, violet
Red, orange, yellow, green, blue, indigo, violet

Read More