Teddy’s GI system is a wreck.
I mean, you start with a kid on prophylactic antibiotics for his first year, and then add to that at least 6 rounds of heavy-duty IV antibiotics for line and bloodstream infections. Add in some 10 abdominal surgeries and one brush with sepsis, and you’ve got yourself a digestive nightmare. If he started out life with healthy gut flora, he certainly lost it all pretty quick.
He started out on probiotics, but after his first line infection, I read a few case studies where patients with permanent lines developed infections that were traced back to the probiotics they were on. After discussing whether the probiotics were a good option moving forward, his doctors and I agreed we’d take the cautious route and hold off for a while. Once his lines came out shortly before his first birthday, we resumed probiotics, and he’s been on them ever since, save a month or two after his transplant.
Kidney disease makes you nauseous. Particularly with kids, it tends to make them not want to eat (do YOU like to eat when you feel sick?) and it tends to make them vomit. Teddy vomited every day, 8-12 times a day, from about 2 weeks old until a month or so after his transplant. That’s 21 months of daily vomit, 8-12 times a day.
That’s a lot of puke.
I mean, it’s puke in the car, at the grocery store, in the parking lot, at church, at friends’ houses, at the houses of family members, at the doctor’s office, at Target. Everywhere.
About a month after his transplant, Teddy’s vomiting started showing improvement. Slowly, slowly, he puked less and less. At this point, he vomits infrequently, but still occasionally. Probably 1-2 times a week.
Before his transplant, Teddy had funny poop. After I started him on solid foods (through his tube), he never really got that Toddler Starting Solid Foods poop. It was always just on the edge of being diarrhea. We blamed the meds and the kidney disease and hoped it would improve after transplant. hahaha.
So, immediately after transplant, the diarrhea got terribly worse. All liquid, all the time. And I mean, ALL the time. It was so bad that his Prograf levels (one of the immune suppressants) were really unstable. We’d bounce from undetectable (they found no drug in his system) to somewhere around 20 (which is really high) over the course of a few days. And then back down. And then back up. I don’t remember what his target drug level was at that time, but he literally never hit it. Not once. It was either much much too low, or much much too high. And diarrhea affects Prograf levels.
So we switched around one of his other meds, and though that helped get the Prograf levels stable, it didn’t actually help the diarrhea.
So since Transplant, while his vomiting’s been improving, we’ve basically just switched to diarrhea. Teddy poops a texture ranging from all liquid to sort of like really watery grits, 8-14 times a day.
GI had us try reducing his water. He was on 1.5 liters of water every day, since anything below that level had made his new kidney angry. One of his post-transplant admissions was for severe dehydration when he was on just 1 liter a day. So we reduced his water. First to 1.25 liters a day, then checked labs. His diarrhea got better – down to just 4-5 times a day, and generally less watery. Labs looked great. We were thrilled. That was a few weeks ago.
After 4 days of reduced diarrhea, he started back exactly where he was before we reduced the water. 8-14 times a day, ranging from all liquid to watery grits. Ugh. Ugh ugh ugh.
For the last week, I’ve reduced him to 1 liter. First, I reduced him to just 1 liter through his tube, and didn’t count the water added to his food or the water he drinks. Then, I started counting the water added to his food (which is just 100 mL a day). Then, I started estimating how much he was drinking and taking that out of his overnight liquids. And still the diarrhea. The one positive change is that sometimes in the morning, he’ll bust out with a formed stool. It’s happened 3 times now. In his life. Oh, and he USUALLY doesn’t poop overnight any more, whereas he used to poop a good 8 times overnight.
I don’t know what to do at this point. We’ve also removed all fruit from his diet, but with no improvement, I’m not eager to continue eschewing an entire food group. He gets no sugar. No juice (because obviously that would be fruit). He gets enough, but not too much, fiber. Sigh.
So, we have a followup with GI scheduled for the end of this month. We’ll see what they have to say.