I know you will be surprised to learn that patience is not my thing. I mean I CAN be patient, it just does not come naturally to me, especially when I am waiting for medical results. I would really like them to be immediate and favorable. I am frequently disappointed. Happily, we only had to wait twelve days for the results of Zack’s latest testing.
Jim and I met with Zack’s doctor without Zack last week. It was nice to be able to fully concentrate on what we were being told. We learned that Zack’s motility was abnormal. I mean…we kinda already knew that after watching the manometry machine for two days. The bigger question is why did Zack have normal motility in July before being reattached but not now that he is reconnected? Z’s doctor gave us several theories. He was a little sick after the colonoscopy. Sometimes that can cause the intestines to slow down. His colon is also pretty dilated, so perhaps the peristaltic waves are ineffective and hard for the machine to detect. He had no movement the first and second day after eating, but after Dulcolax was administered the second day, some weak propagating waves were seen. They were not as strong as they should have been, but his doctor seemed encouraged to see them there. We still have a lot of questions……
In addition to the motility issue, Zack’s barium enema showed an obstruction just above his anastomosis (reattachment site). We are not sure what is causing the obstruction, but it does explain why Zack is having so much trouble pooping at the moment.
Zack’s biopsies were non-specific. I take that to mean that they did not show much. His eosinophil level was a bit elevated. His stool sample showed a normal calprotectin level. An elevated calprotectin level indicates inflammation of the GI tract and is found in diseases like Crohn’s and Ulcerative Colitis. I do not think we ever thought those diseases were under consideration for Zack, but it is always good to rule things out.
Because Zack has had a number of strange things happen, Z’s doctor has said that we need to consider that we are missing something. The way his intestines prolapsed last year with the ileostomy was not normal. When he had surgery to tack his intestines to his abdominal wall to stop the prolapses, he tore through 10 internal sutures…not normal. His body reacted like a Hirschprung’s body after his reattachment. He does not have Hirschprung’s. Not normal. The eosinophilic ganglionitis showing up in full thickness biopsies taken in two different places in his intestines at two different hospitals. Not normal. His rectum did not look or feel normal to his surgeon. You get the idea.
Z’s doctor and surgeon have spoken and come up with a new plan. Zack has started on a course of prednisone to see if his colon gets back to normal size. If he really does have eosinophilic ganglionitis, the steroids should make a difference. We are hoping that the steroids will help make the obstruction better. I am still not really sure about some of this, so do not be surprised if I change my story.
Zack’s surgeon is calling us this week to talk to us as well. If the prednisone does not help, Zack may have to have is anastomosis revised. In English, this means that he would have another surgery at the site of his reattachment between his rectum and descending colon to fix the obstruction. Obviously, we are rooting for the steroids!
While I like to think Jim and I do a pretty good job of holding it together in the midst of our life stressors, my sisters thought it might be nice for Jim and me to have some alone time. Our son, Jake, is away on a missions trip to Guatemala for a week and the “Aunts” said they were coming to get Zack. We gave them a crash course on Z’s feeding tube, mixing formula, how to rub Z’s tummy when it hurts and how to give him his meds. They blessed us with 48 hours of much-needed time alone. I cannot remember the last time Jim and I were alone in the house together. Really. We were able to sleep though the night, watch movies, clean the basement (it HAD to be done) and remember that we actually do like each other. It was a nice retreat from the craziness of our life.
Zack came home today. He said he wanted to live with his Aunts forever because they spoil him. He asked why Jim and I do not spoil him.. I think we will need to spend some time reprogramming our guy. I’m glad he has such great relatives.
While he was being “spoiled” he had his first dose of steroids. So far so good. No crazy side effects to report. One side effect that we would be happy to see is an increase in appetite. We are hopeful that the steroids will help Zack’s body and that we will see an improvement in his pain, motility and that they help make his pooping more normal. Always hopeful…
I leave you with some pictures of Zack. I let him choose the photos for you. Whenever Z has to go into the hospital for procedures, he gets to pick a Lego. He then gets to hold it until he makes it through anesthesia without losing his mind. If he accomplishes that, when he wakes up he gets to build the Lego set….or his dad does…but he gets to take credit for it.
A Star Wars fighter.
A birthday present, not a hospital present. We are NOT that nice, remember?
Zack is always listening to our conversations so we were not surprised that he heard that he might have to have his anastomosis revised. He did not freak out, he just calmly looked at us and announced that he would like the Millennium Falcon if he needs surgery again. He’s on to us. We are in trouble…time to start praying those steroids are our miracle drug! Or, I suppose, we could just say no and call the Aunts. I am liking that idea….
~ Dawn ..