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Thursday, March 24, 2011

Why we got Raya a G tube

This afternoon I took Raya in for a weight check. (Since she had lost a few ounces between her last 2 GI appointments, they had us come back.) Today she weighed 10.76kg, or to those of us who don't speak metric, 23 lbs 11.6 oz. That's 5 oz more than she weighed exactly a month ago today so not a great month for weight gain, but at least it was a gain & not another loss, right? :)
Anyway, when I was sitting in the waiting room, there was a lady there that I had chatted with a little bit last month. Her son is almost 2 and has had an NG tube for the last 10 months. He has been diagnosed as failure to thrive (FTT) like Raya was and refuses to eat & drink. His symptoms are a little different than hers but still a pretty similar story. When I talked to her last month, she asked me a few questions about Raya getting a G tube (when, how long we waited, if we're glad we did it, etc.). Today, we had a pretty similar conversation but she was asking more questions, like whether Raya can lay on her stomach or not and things like that. Reading between the lines, I could tell that she is in the same position that I was in a few months ago.
I didn't get to talk to her for very long but the questions she was asking got me thinking about the reasons we decided to go ahead and get Raya a G tube and get rid of the NG tube. It was a decision that we thought about, talked about, prayed about and agonized over for months. Deciding whether or not to cut a hole in your kid's stomach isn't something to take lightly and we definitely didn't. Since I never really went in-depth into why we decided to go ahead with the G tube, I'll try to remember and do it now. :)

 Why we didn't want it:
*we didn't think she'd need the feeding tube much longer, and maybe more than that, we were clinging to the hope that she wouldn't need it much longer
*we didn't want to jump into it too quickly
*we were hung up on words like "permanent" and "invasive"
*one of the commonly reported side effects is vomiting, and she was having plenty of that on her own
*we were used to and comfortable with the NG tube and knew how to handle it
*we felt sorry for Raya because she was already being poked & prodded enough & didn't want to put her through a painful surgery and recovery

Why we ended up doing it:
*we needed to see if her oral aversion and vomiting would improve without the NG tube in her throat
*we finally started to realize that we were dealing with something that would be longer term than just a few months
*I couldn't handle sitting on my baby and shoving a tube up her nose anymore, and my dislike for that process finally overpowered my reasons for not doing the G tube
*I was afraid she would grow up resenting me for the aforementioned tube up nose shoving (irrational, perhaps, but that's how I felt)
*we only got 1 NG tube every 30 days (that's all our insurance would pay for) and the ports would stretch out after a few days and they'd pop open and leak everywhere
*she had problems with skin breakdown from the adhesives on her cheeks
* I absolutely HATED the little pink adaptor tip on the NG tubes because it was always in the way and it poked her when she rolled over on it
*people stared at her & asked what was wrong with her. Not really a problem for a baby, but I didn't want it to affect her self-esteem as she got older. People can be cruel.
* we (us and her doctor) wanted to try jejunal feeds and I knew there was no way we could do an NJ (nasojejunal) tube (if it were to get pulled out, I'd have to take Raya to the hospital to get it put back in by the interventional radiologist and since she was pulling the NG tube out multiple times a week, it wasn't a good option) Putting in a G tube would prepare her for a GJ tube.
*she may eventually still need to have a fundoplication surgery (where the top of the stomach is wrapped around the lower end of the esophagus to prevent reflux) and if she does, she'll have to have a G tube anyway to allow her stomach to be vented since the surgery can make burping and vomiting impossible
*we realized that it wasn't "permanent" & can be taken out someday when she doesn't need it anymore. Then she'll just look like she has 2 belly buttons. :)
*I was tired of carrying a stethoscope in my diaper bag
*We prayed about it
*We realized it was something we needed to do in order to rule out more possible causes for her relentless vomiting
*I really wanted to spend another week living on a plastic couch at the hospital. (sarcasm intended)
*Bottom line, we started to see it as a tool in her diagnosis & recovery process rather than another roadblock. The NG tube vs the G tube is kind of like a screwdriver vs a power drill. They both serve the same purpose but one is more heavy-duty than the other. And did I mention how much we grew to HATE the NG tube? We were grateful for it but really hated it.

Aftermath:
*Recovery was faster than I expected (after her complications had been resolved) You can read about her surgery & recovery here
*Less stuffy/runny noses
*Her original G tube (Bard button) leaked profusely if we didn't have 4 layers of gauze packed under it. Annoying!! Once we got it changed to the mickey button it pretty much stopped leaking.
*No real noticeable change in gag reflex, vomiting or oral aversion but at least now we know that
*Less leakage from the tube popping open when not in use
*The G tube (which she had for 2 1/2 months) only got pulled out once and it went right back in with no problems. The GJ tube (which she's had for 5 months) has never been pulled out, knock on wood.
*The G tube doesn't get in her way like the NG tube did.

Overall, we are completely sure we did the right thing by getting the G tube and I don't think we would change a thing about how we did it. We listened to the people who actually had experience with feeding tubes and tuned out the well-meaning people who gave us their opinions about a subject they weren't really knowledgable in. We kept the NG tube long enough to convince ourselves that we had tried as hard as we could to avoid something long-term/invasive. We felt like we had done her justice, given her enough time to try and get rid of the NG tube on her own, and put enough thought & prayer into our decision. We have never second guessed ourselves or wondered if it was a mistake (except perhaps a few times during the initial recovery when we were still getting used to it :) and we absolutely do NOT miss that NG tube! (Here's a list of the top 10 things I don't miss about it :)

1 comment:

  1. thank you for this... we are considering the G-tube after 6 months with an NG tube. Addie had a NG tube placed day 2 of life because she is hypoglycemic. We haven't been able to get her to take enough food by mouth - she also developed reflux (torticollis & plagiocephaly followed) So the pictures of Raya with her helmet and her tube looks a lot like Addie. I have probably read your account of everything about 10 times (crying each time) because it stikes so close to home. It is nice to see pictures of a beautiful baby that looks well adjusted to her adversity. So thank you for your posts :)

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