Weekend Update

As you can see, Nathan is gaining weight. Which is a great thing. But they still do not know the cause of his low weight. We talked to GI and they stated that all test have come back fine, and that the probe test came back negative, which means his reflux is gone. So now he is off all meds!!!! Which makes us very happy. GI stated that because all their test came back neg. that means his issue is not gastro related. He REALLY believes that it has to deal with his fast breathing. When they listen to him, his rate is 60 beats a minute, which is SUPER fast. That rate is for someone who has been running on a treadmill. So they believe that he burns most of his calories to breath. So now they are leaning to the pulmonary end. We will see them Monday.

They decided against doing the MRI this weekend, because he would have to be sedated and because of his O2 levels, they are not comfortable doing it. Today the Dr. came in and said his MRI is now scheduled for Friday. SO I asked her "Does that mean we will be here till at least Friday?" To which she said, "Yes" (Great!!!! He gets to be here for another week)

They changed his feeding schedule again. He is on the machine for 7 hours then off an hour, and repeat. So he will get 3 hours of a break throughout the day. And the rate is at 40ml/hr. So far he has tolerated it well. But he does not really eat anything else, cause his belly is always full. This is helping play catch up. It also looks like we will continue this routine when we come home. Which means we cannot take him anywhere, since he will always be attached to the machine. I really hope it will not last long. Cause he can't see his GGma if I can't take him over there.

We are so frustrated that all this is happening, yet we would not change a minute of it. Having Nathan in our lives is such a blessing. And even though it has been SO difficult on him, he keeps the greatest attitude. But now he is afraid of people in a white coat. Anytime a Dr. comes in he freaks out. I hope this won't last forever.

I think that is about it for now. I will keep everyone updated as best as I can. Thanks to everyone who has been helping us out, and to everyone to has kept us in your thoughts and prayers.