Back in the ER :-(

So we came home from the hospital last Friday night and we made it about 72 hours before we had to go back again, this time rushing to the ER. I was setting the last things on the table for dinner when James, who was sitting with Darlene, let out a huge scream and started crying in pain. I thought perhaps he'd had a BM {those are still painful for him, since his system is so fresh} or gas, but when I went over to comfort him I had a shock...his stomach tube had been *ripped* completely out of his body! Oh my goodness. Get him to the changing table, search around for gauze and tape since he was leaking out of the hole, get him some Tylenol and drops of sugar water {works as a soothing agent on babies}, and wipe the tube with alcohol & seal it in a plastic bag. Keith, who is for some reason ultra-calm in the kitchen, says "Oh, I think you can just pop that one right back in." Um, NO! The end of the tube has some kind of anchor-looking-doo-hickey on the end of it and there's no way I'm shoving it blind into a surgical opening that's only 2 weeks old! I call the doctor, he confirms not to touch it--just go straight to the ER and tell them it's a time-sensitive injury. I run around, gathering the car seat and diaper bag and anything else we might need, then hop in the car with Darlene {who was kind enough to offer to come with me!}

Once in the ER {which was probably a 30 minute wait and we were only the 2nd family in the waiting room...what do you have to do to speed up the "emergency" part of Emergency Room? Lots of blood??}, we had to wait another 40 minutes for the pediatric surgeon to arrive {one of the guys James had in the NICU}. He got supplies ready and then said, "I have to be honest with you. If I can't get a new tube in, we'll be headed for surgery tonight and there's a risk he could lose function of the stomach tube." NOT what a mother wants to hear! Luckily, he did manage to get it in, but within few minutes of him placing the tube {and James screaming bloody murder the whole time}, James started throwing up. Pretty much for 30 minutes straight. They needed to get an x-ray to make sure the tube was placed right, but he couldn't even lay down for a 1-minute picture without vomiting, especially when they were injecting dye into his stomach. So we had to take him down to do a live X-ray {like a live-action video/movie}and we discovered the problem right away. The doctor had been over-zealous placing the tube in James' stomach and had actually pushed the tube all the way into his esophagus and inflated the mini-balloon on the end of the tube up near his diaphram!! Holy cow, that could have been a disaster. No wonder he was throwing up and choking on his own spit. Once they put it in the correct place, James calmed down right away and pretty much fell asleep within 5 minutes. Now that it was 10:30pm and we were all exhausted, it was time to head home.

The next day we had a post-op visit with James' surgeon, who had heard about the drama the night before. Although he wasn't pleased with what had happened, since the hole/track into his stomach had already been compromised, he decided to replace the tube with the final device called a Mickey button. Normally they wait for the hole to heal around the original tube for 6-8 weeks {just like it would in your ear after you get them pierced} so that the track was stable, but they decided to do it early and just let the hole heal around the button. My poor little guy *screamed* for probably a good 20 minutes after they put that in {I'm sure that skin is so raw now!} and I felt so bad that he'd had two days of such pain. On a better note, It's sooo much easier to manage than the 1-foot tube he had before. It's just a little round disk about the size of a penny that has a 1-1.5 inch tube that's inserted into the stomach with a balloon inflated on the inside to hold it tight to the skin. When we need to feed him, we take out the plug and hook up a short tube that hooks onto his feeding bag.

Speaking of feeding, we are "testing the system" from now thru Friday and if he doesn't have any gagging/vomiting episodes, then we're going to try to start feeding him formula through the stomach tube again--yay! He hasn't had anything in his stomach for over a week now. He's now consistently peeing and pooing, so we know that things are now moving all the way through, which is a reassuring sign. Please keep praying for him as we start the feeding process and his stomach/intestines have to adapt to the presence of food again. His large intestines have never digested anything, so it will likely be touch-and-go.


I must say, with all the treatments and pain our precious boy has to go through, he is my HERO. He endures it all with such a calm and happy attitude, which is just amazing to me. He's teaching me a lot about how much all of us can endure in life and still come out happy on the other side! :-)