Kaleb Prinz: Tummy Tales Part I

When Kaleb had surgery more than a week ago, we had no idea the twists and turns his recovery would make. The original plan involved a few hours in the recovery room, and then HOME. Monday's(13th) surgery was successful, but he woke up highly agitated and his blood pressure was between 180-190 for several hours. That misbehavior earned him a stay on the cardiac floor, and that was fine. His feedings started, and midway through the next day, so did the throwing up. Since he now has a GJ tube(feeding tube that empties in the intestine) he was throwing up stomach acid/bile, not milk....major bummer since the hope was no more throwing up. Since he was "tolerating" his feeds Wednesday, we were discharged-yay! Looking back, he had a major gagging/throwing up episode about 5 minutes before we left, and we probably should have stayed a while longer.

Wednesday evening, there were a few more vomiting episodes, but everyone agreed it was better than it had been, so we continued to have hope that it would resolve. Thursday morning, Linz(our day nurse/surrogate Gma) was with us, we were preparing to get to therapy at Baylor Our Children's House, and he started throwing up blood. From that moment, the rest of the day led to re-admitting him to the Cardiology floor for testing/evaluation. They suspected he had an obstruction of the pylorus, which was preventing all his stomach contents from passing through the intestine. It was a pretty scary time, because every resolution involved emergency abdominal surgery. They did an ultrasound...couldn't find the pylorus....upper GI...finally found out Thursday late afternoon there was no obstruction, but clearly there was a big underlying problem that no one could figure out.

The best anyone could come up with at that time was total bowel rest for 24 hours...turned out to be more like 28, and then we re-started his feedings S-U-P-E-R S-L-O-W-L-Y. He did pretty well, and by Sunday, they were encouraging us to leave again. This was particularly exciting because it happened to be my birthday, and who doesn't like taking their baby home from a hospital stay as your big gift? So discharge Sunday afternoon....Happy Birthday to me....some fairly minor vomiting ongoing, and my wonderful mother stayed with us to help monitor him through the night.

Monday morning, Kaleb was awakened by one of the biggest MILK vomits I've ever seen. Anyone who has a GJ tube knows this is a major problem, because the tube passes at least 10 centimeters into the small intestine, so there is no milk in the stomach to throw up. We started calling the GI office, which on Monday morning is a complete disaster. I must have called 50 times, and couldn't get past the "increased call volume leave a message" recording. By the time I received a call back from one of the nurses, it was early afternoon, and we were directed to go to Children's for an x-ray. At this point, we were totally convinced his new tube was out of place, and being fairly new to the GI side of being chronically ill, had no idea what we were supposed to do. By the time we got to the ER, the Interventional Radiology Department was pretty much done for the day. Of course, that is the department that replaces the GJ tubes, so they sent in the most irritatingly happy Resident to break the bad news to us....Kaleb would be admitted AGAIN, put on IV fluids, and taken to IR the next morning. I think they were taken aback when I jumped out of the chair and began suggesting all the things we could do to keep him home with us until the next morning. I was as close as I've ever been to flipping out, but didn't. Amazingly, they were so worried about Aspiration Pneumonia after 18 months of projectile vomiting, up to the Cardiology floor we went for the 3rd time in a week.

Since this is fast becoming the longest blog of all time, I'll stop here and finish the 2nd half for later. The craziest parts are still to come, so stay tuned! Here are some pictures of our precious man from the first part of the week.

One day, one hour, one minute at a time,
Jenifer