Tomorrow marks one week since Zack was discharged from Johns Hopkins after his crazy stoma prolapse incident. Yes, let’s call it an incident. Since then he has been doing really, really well.
Thumbs up for getting food in his belly after school today…or maybe just into his cheeks.
Even so, the time has come to do something about this stubborn stoma. Zack cannot continue to go on like this and honestly, neither can we. I mean, we could, but it is no longer the best option for our son.
After much discussion with both Zack’s GI here and his surgeon in Cincinnati, we have decided it is time to go ahead with the reconnection surgery. The results of Z’s week-long GI testing in July showed normal motility and normal anatomy. The only abnormal finding was that he was not able to empty his colon after the contrast enema. Like at all. Not one bit. Nada. Zero. Nothing came back out after that procedure. Normally, the fluid they use for the test just runs back out. That was concerning because his colon has been diverted by the stoma for over 14 months and he was still able to hold all that fluid in his body.
Zack’s testing also showed redundant bowel loops in his colon. Think floppy colon…at least that is how Z’s surgeon explained it or maybe just how I understood it. The redundant bowel loops combined with Zack’s withholding ability makes things a little interesting.
To overcome this, he will have his sigmoid colon removed along with part of his rectum. By removing the redundancy in his colon, his stool will have more of a straight shot out of his body. By removing part of the rectum, he should not be able to hold as much stool in anymore. An important point, Zack is not willfully holding his stool. He has no conscious control over it. He likely never learned to stool properly and really has to relearn the behavior. Fun times. Man, it is hard to type this because I understand it when I am listening to the doctor, but I am not sure if people can understand my explanation.
After the sigmoid colon and part of the rectum are removed, Zack’s surgeon will attach his remaining colon to the remaining rectum. She said they use staples for this at Cincinnati Children’s and that they have had great results. Leaking from the attachment site is a complication from this particular surgery and they have not had any incidences of leakage in over 4 years at Cincinnati Children’s. Once they attach that segment, air is pushed through while one doctor looks from below and one from above to make sure all looks good. If they have any concerns at all, they will close Zack up and leave his ostomy to allow that section to heal. If it all looks good, they will then head up to his ileostomy.
The second part of the surgery will be reattaching the small and large intestines. At this point, the doctor will assess if she can use all of the small bowel or if some will need to be removed. It is probable that the part that keeps on prolapsing will have to be resected. Zack has already had a little bit removed once before (15 cm) . This should not affect his body in any negative way. Once this has been done, she can then close his abdomen up. He will also have botox injected into his sphincters to make his first bowel movements less painful. Sounds easy, right?
After surgery, Zack will be on IV fluids until his body begins to produce stool. Typically, this averages 4 to 5 days. The first stool will be very watery and full of mucous (I hope you were not eating while reading this…). Once this happens, Zack will be able to begin eating. Eating real food should cause the stool to begin to form. At this point, Zack will begin taking large doses of laxatives. Are you jealous yet?
We expect Zack to be inpatient for 5-7 days. Once he is released, we will stay another week or so to help regulate his laxative dose. This involves having x-rays to make sure he is emptying properly. We expect to be in Ohio for a total of two weeks if all goes according to plan. We are due for that one of these days….
My eyes are now burning because thinking about all of this makes me tired. We thought we had more time before Zack would have this surgery. When we left Cincinnati, we thought he was done with surgery until next summer. We thought Zack would be able to have a break from surgery and hospitals and pain. I think all of us will just be glad to get this over with and move on to the next phase. I originally thought the next phase was going to be easy, but it sounds like it will have its own challenges. Hopefully, those challenges will be able to be managed on an outpatient basis and without more surgery.
We will update our blog once we get to Cincinnati. Prayers welcomed and appreciated. As always, hug your babies!