A few months ago, D pulled his G tube out at daycare. It was during naptime, and he was quiet about it all, so his teacher only knew what had happened when she saw he was playing something and discovered it was the G tube! As I mentioned in a previous post, the G tube is held in place inside his belly with a little balloon. If the balloon gets somewhat deflated it can be easier to pull the tube out without using a syringe to fully deflate it.
They immediately called me and I hurried there from my work, but by the time I arrived the hole had closed enough that I couldn’t get the G tube back in. D was also very upset and confused, crying, fighting, and tensing his abdominal muscles, which just made everything harder. I called our insurance help line, and they advised me to take him to the ER (where he spent his 2nd NICU stay). Time was of the essence – because the G tube is like a little pipe that goes through the skin, belly fat, and stomach wall, all of the holes have to remain lined up correctly to be able to reinsert it. If we couldn’t get something in him in time, he would need surgery to replace the tube.
I love him but this boy gives me gray hairs!
One of my biggest fears since he got the G tube was that it would get pulled out and that I wouldn’t be able to get it back in myself. It’s gotten accidentally pulled out many times, but each time either myself or Mr T had been there and able to immediately replace the tube. As I drove D to the hospital, I actually was able to calm down some reminding myself that I knew this would happen eventually, it was happening now, and we had a plan to deal with it. Sometimes when you are truly confronted with a nightmare, and then it reminds you how strong you are, that you can deal with it. I understand that on the scale of nightmares D could go through, this is pretty low – but it was also one that had a high chance of happening!
Fortunately, it was early afternoon, so we got there fairly quickly, where Mr T joined us from work. Unfortunately, because we drove ourselves and did not ride in an ambulance, we had to wait for about an hour to get checked in. To the nurse’s credit, when we finally were able to explain why we were there, he immediately took us back and tried to replace the G tube before proceeding with registering us. He couldn’t get the original G tube in, but grabbed a smaller Foley catheter which thankfully worked. We then had to wait around, slowly increasing the gauge, until D was ready for the G tube again. We hung around the ER for about 4 hours – it was a rough day!
We talked with D a lot about why we were there, and how he shouldn’t pull out his tube, but it didn’t seem to sink in. A few weeks after that ER trip, he pulled his G tube out one early weekend morning. I only discovered it when I came to see why he was sleeping in – he was playing with the G tube again! I also couldn’t fit it back in, but was able to use the catheters (the ER gave us a few, bless them) and replicate the process we went through at the ER, and eventually got it in.
D will now occasionally will point to his G tube and ask, “If I pull this out, I can ride in the ambulance?” Let’s hope that doesn’t sound too enticing to him, and that we won’t have to repeat that experience! I’ve tried reminding him how not fun it was to sit around the ER, and that it could hurt, which he seems to accept.
The only ambulance I am interested in riding in
I now have an alarm set to remind me to check his balloon level every Sunday, and have extra catheters in our G tube emergency kits so we can continue avoiding an ER trip for when it happens again. It’s super frustrating that my 3-year-old can pull something removable from his body and possibly trigger an emergency surgery – but that’s our life right now!
Tubie parents, have you been through this ordeal yet? Anyone had to have the replacement surgery? Non-tubie parents, I hope this didn’t freak you out too much!