Ok -- so Adam and I want to get everyone up to speed of all the crazy decisions we have been making over the past few months and even more so today. As I have explained before Gavin is very sick right now and has been getting sicker as the months are going by. This decline in health is mainly due to his failing bowels which are in failure due to the underlying Mitochondrial Disorder. Gavin's bowels have deteriorated so much that he is considered to be in end stage intestinal failure. From the study done last week we have learned that Gavin has no peristalsis, or movement, what so ever in the upper portion of his bowel and stomach. Because of this all the fluid that is normally present in the GI tract, which normally moves through and eventually becomes stool, in Gavin, is left to just sit there and rot. Because Gavin's bowel wall is so weak, soft and thin the bacteria that grows due to the lack of movement is then forced through the bowel wall into Gavin's blood stream causing him to be septic, which has been occurring on average, on a biweekly basis. Each of these infections has the potential to take our little boys life.
Because of the condition of his bowels and the realization that they will never heal but only get worse over time we have come to the point where they need to be removed. This is officially called an Enterectomy, the surgery that will be performed on Gavin sometime late this week. The plan is the cut out the entire small bowel, large bowel and colon, leaving a very small section of jejunum, which is the top of the small bowel, which will be brought out through Gavin's abdominal wall and will resemble an ostomy. The rectum will also be closed, in what they call a blind pouch. We need to keep a small portion of the small bowel in order for the liver and pancreas to drain. Gavin will still have a drainage bag coming from his stomach.
This surgery could change our entire life as we know it. This will not cure Gavin of his disease, which is degenerative and could cause other issues as time goes on. This surgery is a way to give Gavin and our family quality of life. This surgery will place Gavin's liver at great risk, but we are hoping that the Omegaven will help save his liver from failure. This surgery has a lot of promise but it also holds many risks. Adam and I have been very well educated on our decision and we both feel this is the way we need to go. We really have nothing to loose. Right now Gavin's life expectancy goes on a day by day basis and that is no way to live. We want our baby boy to be able to grow, thrive and develop all of which are being hindered by the frequent episodes of sepsis.
We thank you all in advance for you overwhelming support. I really hope you understand what a powerful impact your support and prayers have on our life. Right now we need you all more than ever. Even though we are very excited about the promise this surgery and next step has we are still very scared. God is an amazing God and we really believe this just might be the break our family needs.