Jack was admitted at St. Louis Children's Hospital back in March for vomiting. Remember? Well, he's been on a medication called Cyproheptadine, or Periactin, to slow the Cyclic Vomiting episodes. It's worked wonders! Jack's been on the verge of an episode (vomiting that can't be stopped) a couple of times but he never made it to the messy stage! Wahoooo!
However, on a more serious note, he hasn't fully recovered from the episode back in March. We've battled constipation and gas most of the time. We stopped pushing the blended diet into Jack's belly with large syringes because of some serious leakage and stoma (site where feeding tube enters the stomach) infection after infection. We switched g-button brands to get a better fit and the blend went through the pump for about a week. All was well! Slower flow of food=happy belly. The leaking stopped and the infections were cleared up. Then it happened.
THIS IS WERE TO SKIP TO THE NEXT SECTION IF YOU CAN'T STOMACH WHAT I'M GOING TO SHARE.
Are you still with me? Jack wasn't pooping and was on the verge of vomiting from being backed-up. I had a feeling that he was impacted because his poop was coming out as only liquid. TMI?! Haha! Not in this blog! We gave him a liquid suppository. Tons of liquid stool and gas. Nothing to help the poop was given the next day and no poop came out. Another liquid suppository the day after that. A small amount of liquid stool came out. At this point I called the GI doctor at St. Louis Children's Hospital to let her know that Jack was impacted and I wasn't getting a good result from the suppositories. We got an abdominal X-Ray. Jack's intestines were filled with stool. We continued with a liquid suppository every night and even gave one enema. Still all liquid stool and gas. At one point there was a blow-out! Love you honey! (I wasn't home. I left 10 minutes before Jack exploded and Jason had the joy of cleaning it up). I checked in with GI every Monday and Thursday. At one point we were giving Miralax twice a day and a liquid suppository each night. The goal was to clean Jack out! Results were good but Jack wasn't accepting his blended diet anymore. We had to switch to formula and he could only handle 2/3 of his usual calories. So now we have tons of liquid poops and minimal food.
THIS IS WHERE YOU CAN JOIN BACK IN IF YOU COULDN'T STOMACH THE PREVIOUS SECTION.
Today, I had the pleasure of taking Jack (and the girls) to St. Louis Children's Hospital for an Eye Center follow-up. GI wanted another abdominal X-Ray to compare to the original. Since I was already heading to the hospital, we had the the imaging done as well as a visit with GI. It was a long day but a lot was addressed.
Jack's intestines were empty. They were filled with gas but no stool. His rectum was stretched larger than it should be, which tells that the impaction was down low. So why isn't he accepting his usual rate of feed? Why is he so uncomfortable? Why isn't gas coming out of his bottom and only from his g-tube and mouth? Why is all stool liquid with massive amounts of gas?
I THINK I FIBBED. I'M STILL TALKING ABOUT POOP!
Jack was 29.14 lbs on June 11. He was 29.8 lbs on June 26 when we went to the pediatrician for the first X-Ray when we were sure Jack was impacted. Today he was only 27.7 lbs. It was a different scale at a different hospital this last time but Jack is weighed in St. Louis at almost every clinic and the log said that Jack lost a little more than 2 lbs. This isn't good. We've been put on a 24 hour continuous feed with breaks (give water, take a bath, etc...) only when necessary. I have to call GI the next two mornings to update on Jack's status. If this extremely slow rate works, Jack will pass gas through his bottom and poop hopefully more than just liquid and bubbles. We'll slowly increase the rate of the feeding pump to allow for scheduled breaks, etc. If this doesn't work, or he can't handle the slow rate, we'll have to do an admit. Jack would be hooked to TPN to give him the nutrition he's missing, while the doctors try to figure out why his gut isn't working.
I'll leave it at that for now. I've already had to stop the pump once for 30 minutes because Jack started to get uncomfortable. He only had 100ml of formula and it was over 2hr 10min. 30ml is 1oz.
