Sugar-free Sweetie Pie

Upon diagnosis, Evan was given a nasogastric tube. This is a small tube that is threaded through the nose and into the stomach. I imagine they are very irritating. It was a nightmare because he pulled it out all the time and it was connected to a 24hour continuous drip feeding pump. Yea, try that with a baby who wants to crawl and walk- NIGHTMARE!!!
 

We would have to replace it every time it came out. It was traumatic for him and us.  I think in some ways it was traumatic to anyone having to look at him too. Little kids always wanted to know what it was and were so concerned and careful.

We are so happy his belly isn't this distended any more :)

In August of 2010,  my sweetie pie had a gastrostomy. This procedure was necessary because he refused anything orally at the time (except breastfeeding). Breastmilk was not the best food choice for him. With this device placed we were also able to get away from that feeding pump during the day and begin his cornstarch treatments.



In this procedure, the surgeons move the stomach up to the abdominial wall and stitch there. His stomach will stay attached there, forever. If I understood correctly it is done by passing a laproscopic tube through the esophagus and attaching it 'blindly' from the inside. I believe, this is the "easy" way. Evan's procedure was a little different. His liver at that time took up a majority of his abdominal cavity. His stomach was being blocked by the liver and intestines. He had to have a little extra planning done to ensure that no damage was done to those organs. Some children needing this tube have to have a lot more rearranging  done to their organs, we were fortunate not to have this complication.

The stomach is stitched permanently so that should it when it gets pulled out or needs to be changed, it can be in the right place and not slip into the abdominal cavity causing major complications. A hole is placed, called a stoma, to provide a place for a catheter or "button". This device his held in place by a small water balloon. It can deflate over time needs to be replaced when it has worn out or it has become too small as he will grow.  There is some daily care involved with keeping in clean and in place but over time it becomes easier to handle/ deal with.

When we no longer need it, it about 10-12 years I'm guessing, We can just take it out and it should close up on it's own.

A friend of mine from Jr High/ High School, that I have become reaquainted with through facebook, reached out to me when she found out that Evan would need a feeding tube. Her daughter had one for years, for other reasons. She is a a miracle baby that survived birth at 25weeks and her story is amazing. You can read her story here.

This little girl recently got her gtube removed. All appeared to be closing well until one day her parents noticed a strange wet spot on her shirt. The stoma appears not to have closed all the way on her and she will be need a small surgery to repair it. I think that with Evan having his for so long he will most likely have to use this procedure as well.