In the Hospital

Zach was supposed to have his hydrogen breath test on Friday morning, we got to the hospital at 7 am and he was doing fine. He was supposed to drink a  2 oz bottle of sugar water and then get breath readings every 15 minutes for 3 hours. However, he would not drink the bottle and the nurses tried placing a NG tube 5 times with no sucess so he was sent home. They did notice however since Tuesday when he saw his doctor here, he had lost a pound. He hasn't been eating hardly anything including his bottles of Elecare. So around lunch time he was admitted to Brenner Children's Hospital for observation and testing.
When we got here, he was only 20.8 lbs and on Tuesday he was 22 lbs. He had bloodwork done and we are waiting on those results. They are also counting every calorie he takes in to keep up with him losing weight. Today he was only 20.4 lbs so we are waiting on the on call GI doc to come by and talk to us and develop a plan. I know on Monday he will have his hydrogen breath test by the GI team. He might end up with a G tube for feeding but we are waiting to hear.

Results

The results finally came back from the pancreatic testing and enzymes when Zach had his biopsy. His pancreas is fine but his enzyme testing came back with him being low in sucrase and maltase, which are the two enzymes that break down sugars and starches in the digestive system. So the doctor recommended having a hydrogen breath test done, which will take place on Friday July 23rd at Brenner's. If that comes back positive it will mean Zach has another very rare disorder called CSID or congenital sucrase-isomaltase defiancy. Only 1200 people are accounted for having this disorder. It means he can not process any sugar or starches so his diet will be even more strict.
To top it off he has only gained 1 pound in the past 9 months, which is good that he finally put on that 1 pound of weight but it's only from him drinking his elecare formula and it only happened over the past 2 months. I think he is getting closer to having to have a feeding tube placed because he is not getting enough nutrients to grow. For now, that's all we know, wait on 1 more test and go from there.