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!
eggplant / 11716 posts
I don’t have any G-tube experience, and that seems like a really difficult situation because as much as you’d like to be able to control it, you can’t control what a 3 year old is doing when you think they are sleeping. Frustrating! He’s grown up so much, though!
wonderful pomelo / 30692 posts
Wow! I’m sooooooo glad the ER was able to replace the G-tube without requiring surgery! How scary this all must’ve been for you!!
Hopefully soon enough, he'll be old enough to start really understanding the situation and be more careful.
blogger / grapefruit / 4836 posts
Oh my gosh. Toddler logic. If I can pull this out I get to ride in the ambulance! I hope he can keep that impulse in check
My little guy would want to do exactly the same thing! So glad to hear updates about you guys!
clementine / 920 posts
I have been wondering how your little guy was doing. Sorry to hear about the trip to the ER but sounds like you have a plan.
My DS had an NG tube for a few months so I had been looking through your old posts since a G tube was discussed as a more permanent option. We were lucky enough to have befriended nurses who live nearby who could help us to replace it the few times it came out. I was trained but it is much harder to put in when your toddler is thrashing about and crying.
pomelo / 5084 posts
What a little stinker! I would have had a heart attack driving myself to the ER!!!! Go mama!
D gets it out eventually, right? I bet you can’t wait for that day!
coconut / 8430 posts
Oh gosh! How scary. You know my little guy isn’t a tubie, but he did have surgery a few weeks ago. His catheter ended up being blocked and we had to go to the ER. One of the things they warned us was that if the catheter got blocked then urine could back up into his kidneys which is a big emergency and he’d have to go back into surgery to put it back in. It was really scary!
The ER tried flushing the tube. It was so simple I wish the doctor had equipped us with the knowledge and tools to do that at home. Perhaps it wouldn’t have been blocked if we had been able to do daily flushes.
I’m glad they gave you a few extra catheters to use in case he pulls out his tube again.
persimmon / 1095 posts
That must be so frustrating to have him not fully understand why the tube shouldn’t be pulled out! How large is it?
blogger / pomegranate / 3044 posts
@Bluemasonjar: I never had to deal with the NG, it’s much scarier to me! Because D needed overnight feeds it wouldn’t have made sense for us. If you need a sounding board about the G tube I’d be happy to chat with you! How old is your DS?
@wrkbrk: eventually – that’s the hope! I am thinking it will be a few more years, though. Probably as soon as he’s old enough to behave with it, we can remove it haha!
@sunny: oh how scary! I hope if it happens again you guys can handle it
@alphagam84: His tube is 12fr, 1.2 cm long. They were able to get a 10fr catheter in thank goodness!
@Anagram: yup, totally out of my control so I try not to stress out thinking about it happening again!
@Adira: @Mrs. Lion: yes, let’s all hope he can resist the urge for a few more years
apple seed / 4 posts
You are a brave and beautiful mama. Carry on.
guest
At least his siblings aren’t pulling it out! I have 16 mo old triplets and one is a tubie. I made the mistake of leaving her in the living room in her diaper for 2 min while I changed my barfed on pants and her sister pulled it out. I came in just in time to stop sister from chewing on it! It must not have hurt too much because she didn’t cry which surprised me. It was stressed to put a new one in because it was our first time doing it at home after being taught how at the Dr’s office.
I just wanted to say I read all your tubie posts before my triplets were born never imagining that I would some day be going through something similar. Your posts were so helpful and encouraging that life could still be normal after a g tube. So thanks for sharing!
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blogger / pomegranate / 3044 posts
@CLEEP88 – oh my goodness! My oldest did pull it out once when D was a baby, it was also my first time replacing it! I’m glad my posts were helpful to you! Hope your little tubie is doing great
@bettywang: thank you dear