The morning of Kaleb's second surgery, my feelings were all over the place. I was no longer confident that the GJ was going to help. I was worried we were putting him through another surgery for a tube that was just going to work itself out again. I was still terribly disappointed that Kaleb was going to have to go back on continuous feeds again. And on top of all of that, I had a very strong feeling that more was wrong with Kaleb's digestive system than we knew and/or they were looking close enough to find. In fact, I'd felt that way for a very long time. For almost 22 months, everyone and I do mean everyone has been telling us Kaleb is a Cardiac kid....Cardiac kids throw up. The problem with that explanation, is that for the past several months we've been looking around at other Cardiac kids who have STOPPED throwing up and STARTED eating (by mouth) by now.
The plan for the surgery was a replacement of the GJ tube and a shot of Botox to the pylorus....yes, I did say a shot of Botox. Apparently, in addition to helping some of us feel better about ourselves, Botox is now used to paralyze body parts that need to relax a little more. The hope was that if Kaleb's stomach started emptying better following the shot(or not), we would have a better idea of how to proceed with his treatment. I found it mildly amusing that Kaleb at 21 months old would be the first in our family to enjoy a shot of Botox, and insurance was going to pay for it. I might have even suggested that they could save the leftovers for me....or I might not have. ;)
We were in Pre-op waiting for the fun to begin, and the anesthesiologist walked in and introduced himself as Cardiac back-up anesthesia. I mean absolutely nothing against the poor man, but that was pretty much IT for me. With Kaleb's Heterotaxy and his history of arrhythmia, this Mama Bear was in no mood for the back-up team on this day or any other day. I'll be honest. I was just a few seconds from grabbing Kaleb and heading for the door. Then the most unbelievable thing happened. Our surgeon, Dr. Megison, walked right by the room, saw us and came back. He didn't know Kaleb was having a procedure that day, was concerned that he was still having problems, and wanted to observe to see if there was anything he could do. I can't say enough good things about the man. I felt a little better, but still didn't think I could reconcile the back-up anesthesia part. Then the 2nd most unbelievable thing happened. Kaleb's Cardiologist, Dr. Nugent, on his way to St. Paul, walked right past the room and stopped to check on us. He reassured us that Kaleb has been doing very well, that should anything scary happen the right people could get to him quickly, and suddenly I knew it was going to be okay. Thank you again, God, for sending the right people to us when we most needed them.
They took Kaleb back for the procedure, and everything went smoothly. When Dr. Barth met with us immediately after, he began by telling us, "I think we really learned something today." While placing the tube this time, he and Dr. Megison took a close look at the pylorus, and even got a picture of it wide open. There had been no need for the Botox injection, after all. However, they discovered Kaleb has had a very unusual GI defect the whole time. He has extra folds of tissue that completely cover his pylorus, and prevent it from emptying correctly. In addition, the position of his intestines directly connected to the pylorus makes peristalsis incredibly challenging(or pretty much impossible). All of a sudden, his incredible gastric emptying problem and intense vomiting made sense! We finally had proof that more was wrong with his digestive system than just being a Cardiac kid. I can't tell you how many GI specialists have seen Kaleb, and not one of them thought a structural defect would be found.
You could tell Dr. Barth was very surprised, and unsure of how to proceed. The unique positioning of his intestines made it very likely that the newly placed GJ tube wouldn't last much longer than the first one, and Kaleb needed general anesthesia to place both of them. He clearly needed the GJ, but it wasn't realistic to put him under every couple of weeks to replace the tube.
We'd been here before, with a situation that called for a solution where it didn't seem there was one. The people at Children's Dallas are really good at finding seemingly impossible solutions. Dr. Barth, thinking out loud, suggested that a much longer GJ tube might be the answer, but he had to find out if it was available in the size necessary for Kaleb. It was, and Kaleb was back in Interventional Radiology the next morning for his 3rd GJ tube in 2 weeks. I was understandably terrified, since this was Kaleb's second date in 3 days with the rotating table and no anesthesia/sedation meds, but this time would be different.(slightly) Using the newly placed GJ tube as a guide, the Radiologist was able to place the new tube that was 8 centimeters(3.14961 inches) longer than the original, successfully and in about 15 minutes. I'm grateful that it was successful and Kaleb didn't need another surgery, but again....no one will ever convince me that it can't be done better than strapping a toddler to a rotating table and jamming a foot long tube the diameter of Rigatoni into his belly, absent anesthesia and sedation meds.
Back on the Cardiac floor, with his newly placed GJ tube, his tube feeds were restarted, and we were able to start thinking about getting back home. We were told by the GI team that they have never seen this defect before, and if they document it, they'll give us a copy. It's strange how I thought I would feel better when we finally had the answers for his GI problems, but I don't. There really is no magic "fix" for this problem. His longer GJ tube will help him grow, and that's really important. But we don't want him to be tube-fed forever. Dr. Barth says kids with the severity of feeding issue that Kaleb has usually eat by the time they are 8-10....years old. I'm still in shock about it. He says we'll be happy years from now that we've been patient. Well...it's clear he doesn't know me very well because I've never been a very patient person. ;)
For now, I'm focusing on seeing everything positive about this GJ tube. So far, I have the following list:
1. He's been cleared by Dr. Barth to get back in feeding therapy, and I'm optimistic that with our awesome Baylor Our Children's House therapist, Lauren, he will start rockin' the potato soup again soon.
2. He's no longer vomiting formula(he is still vomiting though), so he's growing!! He's finally hit 22 pounds, and drum roll please....he's ON THE GROWTH CHART! What? What?! Yep, that's our not so little man checking in at 10th percentile.
3. There are some amazing tubie moms out there that sew the most amazing covers, backpacks, and clothes that make tube-fed life much easier. Kaleb has been working on wearing his backpack, and he looks adorable! It's still a work in progress, because with the formula, bag, and pump, it's several pounds of extra weight. But I'm so proud of how he's just accepted it as another part of him without complaint.
That pretty much covers how Kaleb got his GJ tube, and everything we learned in the process. We continue to be amazed by the resilience of our sweet baby, and thank you for continuing to love him and pray for our family.
One day, one hour, one minute at a time,
Jenifer
So happy he was peacefully sleeping after surgery
Finally an escape from the room-wagon rides rock!
Calling me on his remote phone while working his Iphone app-a Mama fave!
Listening to his heart with his special stethoscope-it is on the right side!
Dr. Pepper anyone? 2 days after GJ, he started doing this for the first time.
His wonderful Mimi(my mom) sharing a nap
