Two weeks out from surgery and Zack feels “awesome”. Those of you who know him recognize this as his usual response to the question, “How are you feeling, Zack?” He very rarely deviates from this response and it always makes me smile. I am blessed to have such a happy boy.
I do believe that Zack actually does feel awesome at the moment. In fact, he seems to have been feeling noticeably better since his last surgery. My theory is that he felt so bad before surgery because his colon was so large and not working. Now that his colon is resting and he has a functioning, non-prolapsing stoma he feels like a new boy.
We are dealing with a few issues. The biggest one at the moment is that part of his incision has separated. I have been told this happens more frequently that people think and that these wounds require attention as they can become quite serious rather quickly. We have met with Zack’s surgeon here and the wound ostomy nurses and come up with a plan for handling “The Wound”.
Zack being brave getting his IV in the ER. Doesn’t he look thrilled?
The hope is that it will heal from the inside out. The problem is where it is located. His incision is at the top of his stoma in an area that is normally covered by his wafer — the piece of the bag that sticks to his skin. Pulling off sticky bandages from an open wound is not very conducive to healing. To try to avoid that, we were cutting out a bit of the sticky part (wafer) to keep the adhesive off of it. That allowed stool into the wound. You can see how this was a bad combination.
Happily, people smarter than me came up with a much better plan. I will tell you what we are doing, but it might bore you. You can skip this paragraph if you would like. First, we pour stoma powder into the wound and dab it with Cavilon skin barrier wipes to help seal the area. Second, we apply Aquacel Ag which is an antimicrobial dressing that has silver in it to help aid in healing the wound. After that, we place a large piece of Duoderm over the whole area with a hole cut out for Zack’s stoma. Over top of the Duoderm we use Eakin rings which are soft, moldable skin protectors. They go around the base of his stoma adding another layer of leak proof protection for the wound. Finally, we put his wafer over all of that and then attach his bag.
We were hoping that all of that would last for 48 hours, but sadly, we had quite the leak at 4 a.m. I will spare you all of the details, but there was carpet steaming involved along with a shower and replacing all of wound care items mentioned above. Tomorrow we will see our ostomy nurse and she will evaluate how well Zack is healing and adjust our plan accordingly. We will get the weekend off and return again on Monday morning to do the same. Hopefully by Monday we will be well on the way to healing that crazy wound.
Zack’s surgeon also talked to me about the dangers of an incision that has been weakened by multiple surgeries and/or wounds. There is the danger of a parastomal hernia. There is risk of obstruction. The wound can get bigger and deeper. Basically, fun things. I used to just brush off risks of complications and not pay much attention to them, but I am now a seasoned complication mom and made sure to pay attention to what he was saying. Maybe by paying attention Zack will avoid them this time. It is silly, I know, but if nurses and doctors can have their superstitions, I can have mine. If only I believed in superstitions….which I do not.
Yesterday Zack and I also met with his GI doctor to talk about surgery and steroids and lots of other things. We discussed the fact that Zack’s anastomosis was not revised as we initially thought it would be and how that makes it hard to determine whether or not the steroids were effective in helping calm his eosinophilic ganglionitis. Our surgeon in Cincinnati was originally going to revise the anastomosis, but during surgery she could not find anything physically wrong with it and decided to leave it alone. Her reasoning was that if we need to do a colectomy later, she wanted to leave as much of his remaining rectum as possible. It made perfect sense at the time and still does.
The problem is that Z’s barium enema clearly shows an issue there. Stool cannot pass from an area directly above that point in his colon. Liquid can flow freely below that area indicating that there really is some issue at that spot. Cincinnati believes the stool cannot pass because his colon is so large it just stopped working. Because there is no motility, nothing can be pushed out. That makes sense, kind of…but our GI’s point makes a lot of sense as well. It is likely that Zack needs his colon removed, but what “if” this is the problem?
I felt so many conflicting emotions about this yesterday. I respect Zack’s doctors very much. I actually even really like them as people. Are doctors really actual people? I know they all have the very best intentions and are doing what they feel is the very best thing for Zack. I know his case is unique and that nobody really knows the issue. As a parent, trying to sort it all out and make informed decisions for my child is grueling. The “what if’s” feel like a heavy weight on my chest. It might just be a mom thing. I do not know. Jim is great at making a decision and not looking back and questioning it. I am a bit different.
Ultimately, Jim and I have to decide what we think is best for Zack. We do not want to subject him to unnecessary surgery…he has had more than enough already. We also do not want to miss something that might give his colon a chance to work. If you have been following our story at all this might remind you a bit of the movie Groundhog Day starring Bill Murray. Believe me, it often feels that way to me.
Hopefully Zack’s new ileostomy will last longer than our record three months without significant issues. As long as we can keep it working well, we can coast along for quite a while before making any other decisions. My brain would really enjoy the rest!
Next week is an exciting week for Zack. He is participating in the Maryland Special Olympics for his school. I believe he is entered in the tennis ball throw and the 50 meter and 100 meter walk. He was supposed to be in the run, but that darn wound is keeping him from that. Zack is really looking forward to participating and to having his family there to cheer for him. I am sure I will have lots of fun pictures!
Hug your babies!