Wednesday, October 22, 2008


We had our "care conference" for Jack today. We met with the doctor, social worker, nurse representative talk about Jack and his future. Right now the plan is to see how he does over the next week. The doctor wants to do another barium test next week to make sure that Jack's stomach muscles are working properly to move the food through his stomach. If the stomach is working properly, the next concern is the muscle at the top of the stomach and determining whether or not that muscle is working properly to prevent reflux. It is clear that Jack has reflux issues, I guess a lot of babies do, but his reflux may be a little more severe than your average case. If the muscle isn't working properly then we would consider an additional surgery on that muscle so Jack can keep his food down properly. However, this isn't something that we are at all close to considering and don't even know if there is a problem with this fact Rachael and I are opposed to any surgery on that muscle at this time. This is especially true considering he still has a muscle disease that is likely the source of some of these reflux issues. I'm rambling a little...anyways, we will also get back on track towards introducing the bottle to Jack more often. Rachael fed him tonight and he took 9 cc, which is nothing, but for Jack it is a start and we are happy that he was able to take that much. Apparently he was pissed when it was taken out of his mouth. Quite the complex little child.

Ultimately, what is likely to happen, is that Jack will get a G-tube placed directly into his stomach. This isn't set in stone, but it is a good possibility. If Jack gets the G tube he will be able to come home sooner and Rachael and I can work with Jack and his feeding at home. When Jack is able to do the feeding completely from the bottle we would remove the tube and he would have a small scar on his stomach. Come to think of it, by the time he gets out of the hospital he will have a series of scars. sucks. Another bummer is that he would have to go under general anesthesia again (though we now know he can handle it).

Rachael and I realize that the G tube is likely the best way to get him home sooner than later. It isn't good for Jack to be in the hospital forever and we need to get him home so he can get accustomed to home life. It will definitely be better for his development and I'm sure once he is home Rachael will likely hold him non-stop for months on end.

Riley, the other child, remains good. We are getting used to having her home. No news is good news.

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