Tomorrow is almost here and it is a big day. Cannon’s Chait Button is due for replacement and it is definitely time. It opens too easily. (The water in the shower even managed to open it once!) And it leaks a bit. The tough part is that this particular button can be tricky to get out and put back in due to the spiral nature of the tube. I have even had people write into this blog to tell me that this happened to their child. Here is a photo. The tab part that you see is above the skin and what we open and connect a tube and then catheter syringes to to do his daily flushes. The spiral tube is below the skin and goes does into the colon. The cecum to be exact. I believe the technical term is a Chait Percutaneous Cecostomy Tube.
So, tomorrow…..we have to be at the hospital at 7. His tube will be changed at 8 by a surgeon and Interventional Radiologist in the Interventional Radiology Lab. They do it there because dye can be injected and they can see better what they are doing. They will be doing this and checking to see if any scar tissue has developed. This is suspected.
Then, he will be taken to the OR where his G.I. doctor (at 9 a.m.) will be doing an Upper and Lower Endoscopy on him. Cannon has not been doing super great lately. His throat seems to be bothering him and the pediatrician says it is red (but not strep). He has had a lot of unexplained pain and tons of moments where he cries out over and over. Being that he is Autistic and doesn’t always interpret those feelings correctly…..He usually yells “Achoo” over and over at the top of his lungs when this happens. Cannon has also been very lethargic as of late. SO….G.I. will take care of the 2 scopes and getting a bunch of labs drawn. Basic stuff and also checking to see if he is Anemic (again) and doing a thyroid panel.
I am trying not to be nervous. It is hard but I am trying. Failing in some moments. Succeeding in others. I don’t want them to find anything. But I want there to be a solution for his pain. We need that button to go back in. As much as we fought to keep from having to put that thing in him originally….we can’t imagine life without it now. For good reason. It gave us our life BACK! Prior to the Chait……Cannon was being admitted to the hospital every 1 1/2-2 weeks for a week. We do NOT want to go back there.
While thinking about that last statement tonight…..a verse came to mind. John 14:27. “Peace I leave with you. My peace I give to you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid.” As well as Matthew 6:34. “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble for itself.” Some days….a little reminder is all you need to help you recognize the thoughts that are not productive and be able to take them captive. I will be doing a better job of that from here on out. I am committed.
If you happen to have any extra prayer time in the morning…..we would greatly appreciate any prayers for our beautiful boy! Much love!