Yesterday was the day for our consult appointment with Cannon’s surgeon. And boy were we surprised at what he had to say! He came into the room and immediately said he had a strong gut feeling that the Chait Button I mentioned in previous posts was a bad idea. I jumped at the chance to voice our very real concerns! We are terrified of this! We think that it will constantly bother him and cause him great sensory pain! And that he will pull it out, no matter how hard we try and closely we watch him. He said he saw several emergency surgeries in our future to put it back in if we went ahead in this direction. The Chait Button has a spiral tube internally not a straight one…..and is very difficult to get back in. And if it’s yanked out, it can cause real damage to the surrounding areas. He told us a story from last week. His partner had to do emergency surgery on a kiddo whose button was pulled out by a classmate at nursery school. Mark and I had compiled a list of questions regarding the Chait Button but we never even got to those. I asked him if it wasn’t the button……then what?! He said that there is a procedure out there that has had some success. I have no name for it…..just a description. He would cut out a large part of his colon. I believe he said the entire sigmoid colon. He said that when stool comes into the colon it is virtually liquid. As it moves through the colon, some of the water is absorbed by the colon. He believes that Cannon’s colon is so stretched out and wrecked that it is in there for too long and too much water is absorbed…..making it too hard to pass. So basically it then hangs out and eventually backs him up. By removing a large portion of the colon, it will obviously eliminate a lot of the time the stool will be in this area and should allow him not to have the impaction problems anymore. He left the room for quite a while to look over Cannon’s x-rays and consult with a colleague. They both agreed the button is not a good choice. He wants to do 2 more tests before we go any further. One is a Barium Enema. My understanding is that this is done with a camera that heads up the back door and takes pictures. It can also flush him out if needed. (This was another of our worries. That he will get impacted in the meantime and will require another cleanout….pre-surgery. We won’t let this rush our decision but it is a valid concern and possibility.) The doc wants to know what it looks like in there and what the route is like. Honestly, I cannot remember what the other test does. I had shut down by that point. I was in disbelief that we were talking about a major abdominal surgery! He said that the recovery would be rough and would probably include a couple of weeks in the hospital. It’s just unbelievable, friends. I know I’ve said this before but…..all this time, I just kept thinking we were going to find this one little thing. This simple problem that would fix all of this. I have been keeping this journal with all intake and output hoping that we would see that one food, drink, medicine, or exposure that would be the villain. I called my mom and a friend on the way home. They both let me vent and my friend helped me with my perspective. We don’t know what they are going to do yet so there is no use in getting too upset and GOD IS IN CONTROL! I needed somebody to keep me in check so thank you friend!!! You know who you are! 🙂
I can’t tell you how very very thankful we are for this incredibly thoughtful surgeon. We have been amazed at how focused he is on Cannon and his specific needs. He is first and foremost, a surgeon. You would think he would just want to cut. But not this guy, he wants to be sure we do this right! He wants to be sure we have exhausted every test possible, even the less likely ones, before we do something drastic. This man has my total and complete respect and we are trusting him with our baby’s life. We will hopefully get the 2 tests he recommended next week and then make our decision. And we have to make the right decision. Because if we go this route, it cannot be undone. There will be nothing to put back. He expects for the surgery, whatever it is, to happen in the next couple of weeks.
I have to admit that I was broken this morning. The strength and focus I had yesterday had weakened and I was feeling overwhelmed with the enormity of what is going on. I opened my inbox to find an email from my sweet little sister. It had links to various songs of encouragement. Each one touched me deeply and allowed me to cry and cry out to my God for the help we desire. (I love you Rebecca! Thank you so much!)
Here is one of those songs. I pray it will minister to your heart, as it did mine, when you read the lyrics and watch the video.
Part The Waters Lord / I Need Thee Every Hour
Words by Annie Hawks, Robert Lowry; Music by Robert Lowry; Arrangement by Nicol Sponberg, Allan Hall
When I think I’m going under, part the waters, Lord
When I feel the waves around me, calm the sea
When I cry for help, oh, hear me, Lord and hold out Your hand
Touch my life
Still the raging storm in me
I need Thee every hour, most gracious Lord;
No tender voice like Thine can peace afford.
I need Thee, O I need Thee;
Every hour I need Thee;
O bless me now, my Savior,
I come to Thee.
I need Thee every hour, in joy or pain;
Come quickly and abide, or life is in vain.
THANK YOU ALL FOR YOUR PRAYERS AND SUPPORT! We are so grateful that you are coming along on this journey with us!