Sunday, March 01, 2009

Our First GJ Tube Close Call

This morning my mother called me down to the playroom in a panic today saying that Cameron had pulled out his GJ tube. Naturally I being a card carrying member of the Catastrophist's Club imagined the worst and thought he'd pulled the whole thing from his belly. I dashed down stairs to see if I could reinsert the tube so the hole wouldn't close up before we could get to an ER. Rounding the corner I found Cameron laying on the playroom floor squealing with glee happily waving his feeding tube around in the air, formula spraying everything. Only the tube from the feeding bag had come out and not the actual three port belly tube attached to the baby. Thank god it was nothing really serious. I jammed the feeding port back in the GJ tube and cleaned him up. Crisis over.

Then about 25 minutes later my husband and I are playing with the boys and chatting and I see Cameron happily pulling his tube again and this time it just comes right out easy as pie. No big deal, I'll just pop it back in again. But wait, he shouldn't have been able to pull it out that easily. Upon further inspection I realize the feeding tube port isn't going to stay in and that it just slides right out! The very tip of the feeding port has broken off and is still stuck deep inside the Jejunum port preventing Cameron's feeding tube from staying in place. Of course I assume that we'll need to make a trip to the ER to replace the GJ tube in Cameron's belly.

But thanks to my husband's calm and quick thinking he went and got a dental pick and he was able to pull the broken piece out and we replaced the whole feeding bag and tube port all together. Now the crisis is officially over. Whew!

Since we've been home we are trying to stick to a routine and it seems to be going well, though the boys are still not sleeping throught the night. One of the more confusing things that is happening since the boys had their GJ tubes put in is that Cameron, and sometimes Evan, will have these heaving episodes. Usually this happens when we try to put something in their mouths like a bottle or a spoon of stage one foods. But it's now happening to Cameron when he has too much saliva in his mouth or belly and he's started to gag and heave and retch while laying down and even in his sleep, just like when we were in the Hospital.

It's pretty horrible when it happens. He throws up bile and saliva and then continues to dry heave for several minutes afterward. The poor little thing gets hot and sweaty and his eyes water and he's exhausted once it's all done. Evan is not nearly as bad as Cameron but I see it happening more with him too. Especially when we were giving some meds by mouth. We've stopped giving the meds by mouth now and just put them through the feeding ports in their bellies. The only things that go in their mouths are paci's, a tablespoon of pureed stage one foods if I can convince them to try it, and the occasional wet wash cloth and Occupational Therapy tools to desensitize the boys mouths.

It is quite sad that we can't feed them anything by mouth really and they haven't really enjoyed putting many items besides their fingers in there. Hopefully we'll find the one thing that really triggers the desire to put things in their mouths, though I suspect that won't happen until they get their first teeth. Who knows when that will happen, but so far I have felt nothing indicating there are little teeth hidden in those mouths.

In the mean time we are waiting for the next three months so the stoma site (where the tube goes through the belly to the stomach) to heal so that we can have one of these GJ tube Mc-Kie buttons place. Much better than the big honkin' three prong tube I put a pic of at the top of this post. (sorry this one is so big, I couldn't get it to shrink)

Here are a couple of pics I've managed to snap this week. It's been difficult to play with the camera lately and the boys are not willing to pose right now. Hopefully tomorrow they will get their first significant snow fall. Daddy has some plans for that picture so stay tuned!


Cameron looking EXACTLY like Evan, so much so we almost couldn't tell ourselves!

Evan working on his sitting skills.

Evan's mischievous smile! No Mommy, that smell didn't come from me!!?!

Cameron working on his fine motor skills.

Containing the Double Trouble team.


Jen & Jeff said...

They are soooo cute!!

kozer1 said...

I know what you mean about the gagging and retching. What happened with my little ones is gradually after tube feedings began, slowly they wouldn't tolerate ANYTHING in their mouths without gagging/retching/vomiting. First it was the bottle, so they stopped drinking anything by mouth. Then it was the foods, so no food by mouth. Then the paci's started so no more paci's. For months it was like this until speech therapists intervened and now we are working on the eating/drinking issues....Supposedly, it is quite normal and common for tube feeders to turn into 100% NPO (nothing by mouth) and stop taking paci's (causes gagging). Don't be alarmed if it happens! Have you guys been seeing a feeding therapist/speech therapist?

Annie and Jason said...

Hey Laura - glad to know the tube didn't come all the way out! Do you guys have the little red backpacks to hold the feeding bags? Very convenient!
I also noticed you said you couldn't wait for the site to heal up so they can get the Mic-key button. Did the hospital tell you they have to be 20lbs? Apparently over in my woods, Jax could get the button for just the g-tube once healed, but for the gj combo button, the baby has to weigh 20lbs! Just thought I'd let you know that's the info we got!
Isn't it odd how much they heave and gag and vomit with the tubes?? I just don't get it...and I'd love to hear success stories from anyone out there of their child eating again!!

Jennifer said...

im sorry you have to deal with such pain in the ass tubes! hopefully from now on it will be smooth sailing...right? the boys are as adorable as ever.