Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Clinic Day April 2015

We started the day with nephrology. Teddy’s turning into an absolute GIANT these days, rocking the scale at 14.3 kilos in just a diaper, and a big 37 inches. He’s up a few pounds and an inch and a half over his last appointment. 🙂  Fatty.

Everything looks good from a nephrology standpoint. He had a few weird things in his labs, but they’re easily explanable by his phenomenal growth.

By the time we got to cardiology, Genna was really revved up and hyper and the doctor was very patient with us. He wants to monitor Teddy’s heart every year for changes, but as it stands right now, his stenosis isn’t too bad. There’s no way to tell how fast it’ll progress, so we’ll just keep an eye on it. It’s most important to keep his blood pressure under control, which obviously we’re already trying to do with nephrology, and have recently found the dose of anti hypertensive that works well for him.

Then we saw dermatology, who said that we probably wouldn’t have trouble with his dishydrotic eczema until fall again, but that I needed to embrace the cream and not fear it. If I hop on using the prescription cream as soon as I notice redness in the fall, it shouldn’t get as bad as it got.

However, he does seem to have “regular” eczema that flares up bad when his seasonal allergies kick in. It’s worse this year than it was last year.

That’s about it.

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Lurie Children’s in Chicago for GI

Catching up a bit here. In March, we went to see a GI doctor in Chicago for more ideas on Teddy’s continued vomiting and diarrhea. We loved him!

First, the appointment started exactly on time and lasted 90 very unhurried minutes. The doctor was familiar with Teddy’s history and conversant on the details. He spoke of his other transplant patients. When he asked what Teddy ate and was told that he gets a blended diet through his gtube, he said, “ok,” rather than, “what? what is that? how do you know how many calories he gets?” and he didn’t seem stupefied by the idea that this meant that his caloric and volume intake would fluctuate on a daily basis. All awesome things.

He decided to delay any action on the diarrhea. It’s improved significantly and doesn’t seem to be causing the same issues with Prograf levels (diarrhea affects how the body absorbs his anti rejection drugs) or bicarb levels (in his blood). He still gets wicked diarrhea from time to time, but it’s not constant.

He suggested the first thing we should try with the vomiting is to feed him less food less often. So I’ve adjusted how we feed him to give him only 120 mL (which he can’t do more than that any more anyway) every 3-4 hours. I don’t start feeding him via his tube until noon because I like to give him some empty-stomach time to feel hunger and to help stimulate him to eat orally, so this means that I can no longer get all the food in during the day. So we give him some food overnight now, as well, mixed with his overnight water (800 mL).

This has significantly reduced (but NOT eliminated) the daytime vomiting, but we’ve exchanged it for occasional night vomiting. It’s still an overall reduction in vomiting, so it’s still an improvement, but I really hate waking up in the middle of the night to catch vomit.

He also suggested adding Ginger, but nephrology nixed that idea immediately.

Also, he wants to proceed with another scope, gave our local (well, Iowa City) GI some specific instructions to follow, and wants to review the report and the biopsies himself. He’s checking for EoE, as well as some malabsorption issues. He said it’s highly unlikely this will turn up anything, but we need to check to make sure.

Finally, he thinks it’s more than likely that Teddy has slow gastric emptying, but would prefer to solve that with changes in feeding schedule rather than drugs. There is one drug (it’s actually an allergy med) that is used for slow emptying as well as an appetite stimulant that he thought might be useful. We’re currently pondering whether to give that a try. Hey, once you’ve got 10 prescriptions, what’s one more, right?

The scope is scheduled for May in Iowa City and will be Teddy’s first time NPO without a hospital admission for IV fluids. I’m supposed to give him mostly pedialyte the day before and get his whole 1 liter in before the NPO starts, even if that means he misses most of his food calories that day.

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