Our family met with Cannon’s surgeon this afternoon to discuss our surgical options. There had been two tests ordered and performed since our last visit with him and we were interested to hear what they had shown.
The Sitzmark test was one where Cannon swallowed a clear capsule with 24 tiny rings in it. He got an x-ray at the end of a 5 day period to see if he had passed any and/or all of them. And he did pass them all! Which means that his issue is not necessarily a motility issue. And would therefore eliminate the possibility of bowel re-section surgery (the removal of most of his colon). The second test performed was a Barium Enema. The surgeon’s goal with this one was to see how stretched out Cannon’s colon is from his many many impactions. Well, he did see a very stretched little colon but he said he thought it could have been worse.
His final decision was run by and presented to his 2 partners. The 3 of them are the only Pediatric Surgeons in our city. They all agreed that it was the right one. Cannon will NOT have surgery. The first surgical option was to have a Chait Button implanted in his side that would directly access his colon and open to allow insertion of medicine daily. To cleanse him completely every single day. This is what Cannon’s G.I. doctor recommended. The surgeon feels that “the risks outweigh the potential gains.” The chief concern is that Cannon will not be able to handle the presence of this plastic button in, on, and protruding from his body with his intense sensory issues. And that he would just pull the button out! If he was to do this, it could puncture other organs and potentially cause sepsis. Essentially poisoning his body by leaking stool into areas that aren’t intended to have it. He is also worried about scar tissue buildup around the button which could cause pain and potential blockage. There are also other reasons but these are the more serious ones.
We are relieved that Cannon will not have to have major abdominal surgery but saddened that there is nothing that can be done to help him long term. We were told to keep doing what we are doing with diet and medication and that if we ever feel like we need new options…….there is a place in Columbus, Ohio that specializes in his kind of issues. The surgeon commented that he felt it would be better for him to endure hospital stays every couple of months than to live in constant sensory and physical pain from either of the surgical options. So, there it is. We will have to live with that and I think we can……for now.
I was reading this morning and found this very familiar verse. Clinging to its promises today and for the future……….
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you,” declares the Lord, “and will bring you back from captivity.” – Jeremiah 29:11-14
Thank you so much for all the prayers and support for our sweetheart. Our Cannon. Much love!