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When You Overinflate a Gtube -- Originally Published December 4, 2007

Wednesday, June 23, 2010

Well, a lot has happened since our last update.

First, we found what is probably a big contributing factor in Michael's reflux and puking. For reasons that are NO ONE's fault, Michael's G-button balloon was over-inflated. Let me explain what that is. The button in his stomach is held in place by a balloon that is filled with water. This balloon sits inside the stomach and so takes up space. It is supposed to have 5 cc's of water, and his had 7. Here is how we think it happened. Two Mondays ago, we checked the water in his balloon, and it was only 3 cc's. This was not the first time we had checked it, but it was the first time it read "light" on water. We checked it several times in a row to be sure we were getting the right result. (You check it by pushing a syringe into the end, which triggers a release of the water into the syringe. Sometimes the water doesn't want to come out, so you need to pull it. So it is always a good idea to release the water and put it back in a few times before adding any water.) Now we did this on the day we took him in to the doctor for his most recent illness, which is also about the time the reflux got worse.

The next Monday we (Mom and a different nurse) checked it again, with a 5 cc syringe, and 5 cc's of water came out. We lost a little bit putting it back because Michael started kicking.

Now yesterday we checked it again (Mom and the first nurse again). Again, only 3 ccs of water, but this time it was obvious that the syringe was sticking. We checked it three times, with the same answer. So, we added two ccs of water. But, neither of us felt quite right about it. To begin with, it seems odd to lose that much water in one week, and Michael cried when we put the water back in. So, we got a brand new 10 cc syringe, attached it, and 9 ccs of water came out along with some air. Yes, 9. We are probably lucky the balloon didn't rupture. Two ccs we had just put in, but that leaves 2 ccs of water unaccounted for unless we go back two weeks ... to about the time he got sick with his infection and started burping up more (from the antiobiotic and his infection). Was there an additional cause that we didn't know about because if the timing? It seems likely. This could explain the excess mucous and why the same amount of food used to fit in his stomach and now didn't.

We have not yet started the new tummy medication because we wanted to see if he would improve after the water in his balloon was set to the proper amount. So far, he has improved, but there are still problems. It could be that it will take time for irritation in his stomach to heal -- we're checking with the doctors on this to see when they want us to start the new medication, but we will eventually start it. In the meantime, Michael is still eating 10 times a day, but during the daytime half of the meals are larger (2/3 - 1/3). He feels better with this, but it is sometimes hard to get all the food into his stomach without irritating him on the bigger meals. There is still a lot of gas and burping, and some reflux, but 24 hours with no puking!

Today we also tried the passy-muir valve (speaking valve) with the speech therapist. Sorry to say that it didn't work. Michael tried to breathe but didn't seem to be able to at first. On subsequent attempts, he didn't turn red, but he was struggling to breathe. (His O2 levels were fine the entire time.) Each time, when we removed the valve, he gasped -- so we still have some issues to work through.

Now, for those of you reading to the END -- here is the BEST news of all. WE HAVE A NANNY! She seems like a perfect fit for our family -- right down to being part of the Big 10. Her name is Nanny, and she will be starting a few days before Michael's surgery. Thank you to everyone for your help and ideas.

Well, we are out of space on this update, so enjoy those holiday lights, everyone. They sure are pretty at night.

Megan, Adam and Michael.

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