I have gotten asked several times why the doctors are not going ahead with the G tube and how I feel about it. So I thought I would take a moment to elaborate more on that.
Why not a feeding tube now?
I believe one reason is that Beckett is an oral eater. And while he can be particular, he has proven that he can eat enough calories to be nutritionally complete. At a recent evaluation by a dietician, he was found to be getting 130% of his caloric needs. And these needs were done based on a child with Cystic Fibrosis. People with CF need more calories than most, so it is a different scale. And on their scale, he gets 130% of nutritional needs, so I imagine it is even more than that on a typical chart. So they do not see a need from a nutritional standpoint at this point. Especially when you consider the recent geneticist evaluation of short stature/skeletal dysplasia and that no increase in calories is going to make him grow. So putting more formula through a feeding tube will likely not change his growth. They took the geneticist very seriously this time. I guess after a year and a half of her saying that he must have some form of skeletal dysplasia, GI has decided she is correct. Thus there is not a strong nutritional need for it at this time. He does still have hydration issues that we will continue to work on orally.
They were also considering the tube for "venting." Basically, this means that we would be able to open the button at his stomach, and vent the air out. Because he struggles with such severe distention, they thought a g tube would be helpful in "burping" for him. However, they have since decided that they want to see if the distention in his upper GI tract improves once we get rid of this sort of distal
obstruction. Thus meaning, when we get the cecostomy or ACE and are able to flush him out, they hope keeping the bottom end cleared will help the top end not back up. Hoping that this cecostomy helps the whole system function better so he doesn't need a G tube.
Finally, Beckett has a very sensitive system. The surgery on his colon is going to be hard on him, and they worry there is a possibility of the surgery slowing him down even more. It is going to be hard to have a hole in his abdomen. So, this blow to his system would be increased by adding another hole at the same time. The risk of throwing his system off this much is not worth it at this point when they do not feel strongly that he needs it. In addition, if there is a problem post surgery, and things slow down or mess up, there will be no trouble shooting-- wondering which is causing the upset? The procedure of placing a g tube is simple enough that we can have it done later with
a simple one night stay at the hospital if it becomes necessary. Doing it slowly might benefit him, and it might help us know that the cecostomy alone is enough to help his whole system function better.
How do I feel about it?
I do feel peaceful about the decision. Now, in all honesty, if I am stuck trying to stick an NG tube back up his nose in a month due to dehydration, I will be frustrated. But I do understand why they want to try the cecostomy alone first. And i do understand the geneticists input against needing extra nutritional support. We have several very good doctors working with our son. So I feel good about it. And we will continue us to trust God.
Thank you for your prayers and encouragement. We are so thankful!!
Here is a link to his YouTube video if you haven't seen it-
http://m.youtube.com/#/watch?v=9zWvqs0ZzGU&desktop_uri=%2Fwatch%3Fv%3D9zWvqs0ZzGU
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