I tried to make this short and sweet, but I don't think I faired very well.
Yesterday Jacob received a new feeding tube. The tube passes through his stomach into his small intestine, therefore his feeds and meds will be bypassing his stomach. It 'was' suppose to be a simple procedure. The doctor that was performing the procedure had the requisition which stipulated clearly what size he needed. The enteral feeding nurse practitioner thought in the morning, I better make sure they understand that we do want a larger tube, and the GJ tube (the one into the intestine) not his current G tube (directly into his stomach.)
In the afternoon it was time to bring Jacob in, and I thought I better make sure that they were aware of our wishes to upsize. I explained in plain english (at least I thought it was plain) why it was important to upsize. I'll try to explain - Jacob had a size 12. One size bigger is a 14. We are unsure if the 14 is going to work, because he often needs to be vented of gas from his stomach. With the tube going right into the intestine, that isn't possible. If the 14 totally doesn't work, we can upsize one more size (to a 16) and have a combo tube. On the outside it has 2 ports, but one tube - one that goes into his stomach for venting and one that goes into the intestine for meds and feeds. This seems to be best solution for Jacob - as we see it now. To go one size at a time, they just use local freezing. To upsize 2 or more sizes at a time, they need to sedate. That is not even an option, considering the complications that Jacob could have. Hopefully this makes some sense.
My Mom was very willing to come along yesterday, making travelling much easier if Jacob has any difficulties. She was a nurse a 'few' years ago:) and has been a pillar of strength for us, as she handles anything medical very well. Wow, are we ever opposite. So, yesterday the nurse asks me, 'Are you going to stay in with Jacob?' I quickly replied, 'No, but my Mom is willing to stay!' Usually the procedure is done in about half and hour, but not yesterday. 55 minutes later they finally came to get me. I was sitting slightly uneasy. They had a hard time getting the tube out of the stomach into his intestine. When I heard the particulars, I'm super glad I didn't have to watch. The doctor would have went from having one patient, to two!
Finally we were on our way home, when I mention something about a size 14. My Mom says, 'Oh, I thought they put a 12 in.' I didn't tell her with all the details prior, about why and what the goals were. She knew he needed the GJ tube, and why he needed the GJ. Once we got home, I checked and sure enough the wrong size got put in. I was so frustrated!! After being told 3 times, seriously??!! Now, if he doesn't tolerate his feeds, we're going to have big issues. It'll take a few days to get him up to where we want him to be with his feeds, because we have to start him very slow.
I'll keep you posted.