Trying to decide the best surgical option for Zack was a lot harder than we expected. After several days of agonizing deliberation, we have finally come up with a plan AND let the surgeon know our decision…you know…to make it official…and keep us from changing our minds. There were a lot of arguments for removing Zack’s colon, but in the end we just did not feel comfortable with that decision. Call me crazy, but we wanted to be 100% sure before removing a vital organ from our child.
Instead, Zack will be spending his Spring Break in the hospital having another ileostomy and getting a g-tube. I am pretty sure the Easter Bunny knows how to find Cincinnati Children’s Hospital, right? Ileostomies still frighten us a bit, but this option will allow Zack’s colon time to rest. We know it might not ever heal or work properly, but it will allow us time to try to figure out exactly what is causing the issue. At least, that is our dream. He has already been tested for everything they can think of and a definitive diagnosis has been elusive. We just felt that we needed a little more time before giving up his colon because once it is gone, it is not going to coming back.
Another reason we chose this option is because Zack’s barium enema showed some sort of obstruction at his anastomosis. It could be that there really is no obstruction. It could be that his intestines are so big that his colon has completely shut down and nothing is moving. That is one theory. OR perhaps there is something there that everyone is missing. Maybe? Doing the ileostomy will allow his surgeon to check out the anastomosis internally and IF there is a physical obstruction of some sort, we can redo that surgery. Since nobody is entirely sure, we felt it was worth a thorough investigation.
We are a bit concerned about how Zack will react to another ileostomy. He already says he does not want a g-tube and that he likes his NG tube best. Crazy child. A g-tube is a little tube place through his abdomen into his stomach. It will allow him to get his formula that way rather than through his nose. It is not noticeable through his clothes and seems much safer and easier to deal with than his NG tube. If that is causing such a strong reaction, I am giddy with excitement and cannot wait to see his face when he learns about his ileostomy His last ileostomy was loads of fun, so we will have to resort to some creative parenting to sell this one.
Our target date for surgery is the week of Monday, March 30. Ileostomies are not super hard surgeries. The anticipated hospitalization is 3-5 days. One of these days the anticipated hospitalization date will jibe with the actual hospitalization stay. All I am saying is Zack is due for a complication free stay. It could happen. Fingers crossed.
Today Zack received some new rectal irrigation tubes from Cincinnati. I know you are impressed. When Zack heard they were here he was so excited. He says he cannot wait for his irrigation tonight. We all have dreams. I guess rectal tubes are Zack’s. I would like to change the things that excite him to, I don’t know, Disney World or Hershey Park or bunnies. Something more kid like.
As soon as we have dates, I’ll update again.
Hug your babies!