The GI doc yesterday said that JJ needs to have a G-tube put in. This is a surgically placed tube into his stomach that will allow him to get special formula feedings while still eating as much as he wants by mouth. There. Now that I have accepted that (NOT!) I can tell you that I still have hope of avoiding it. We are going to try an appetite stimulant called periactin while we begin the process of contacting the surgeon for the G tube. I am praying that this is what my little guy needs. He has weighed the same for just about 3 months. He is far past the point at which most children would start a tube. I understand the necessity of it but wish there were more answers or a more clear picture of the problem. The best explanation so far is that it is a problem caused by his painful eating experience prior to his heart function improving and that he is having trouble changing these habits. Makes some sense and I guess the psyche is never easily understood, but it is confusing to me that he has days of eating more normally in between the spurts of not eating. He ate a better lunch yesterday than Isaac ever ate at his age. He ate a whole hot dog dipped in Catalina dressing, a whole gogurt, and a few apple slices.
So we will do what we have to do but I have my concerns that there is some other issue not yet identified. Hopefully, if there is anything else, the pretesting before the surgery will find it.
Isaac is still coughing pretty bad and had a fever of 102.2 yesterday. Doc said if there is a fever today he should get a chest x-ray. So far only a low grade one today. JJ was coughing a horrible barking cough last night but is clear of any other symptoms and seems fine today!! If he is going to get sick we hope he does it now and gets over it....we leave for our cruise on Friday!!
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I'm sorry you are still having to go through so much!
ReplyDeleteHope the appetite stimulant works -- did you try this before? Seems like the doctors would have suggested this earlier? At least if you end up getting the feeding tube and he gains weight and gets on a more 'normal' growth pattern, then you will be able to determine if there are any more feeding problems.
ReplyDeleteBy working a little bit in the NICU at the hospital, I can see that feeding behaviors and patterns start VERY EARLY!
Sue-Hang in there. I know our boys have completely different medically histories but sometimes it's nice to hear from someone whose been close to wear you are at. Trust me...a G tube isn't so bad. As you know, Drew had one.(NG tube until around 6 months, G Tube for another 6 months or so then a Button) He as rolling, crawling, scooting, wrestling, etc. As hard as it is to see our children go through any kind of surgery, we have to think of the outcomes. A g tube helps our kids, that for some reason aren't getting those necessary calories, get the amount of nutrients they need to grow strong. That added strength that they did not have can help their bodies focus on making them stronger! By helping JJ get the nutrients he needs through his tube you can "enjoy" eating times throughtout the day. And it's not forever. Drew's was removed just after he turned 2 and boy does he love to eat! I hope you start to find the answers you are looking for. Kim
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