I started typing this post on June 28 (it has taken me forever)…which was the 5th anniversary of the day Zack came home from the hospital after his first two abdominal surgeries. It is funny to me the things my brain decides are important and need to be stored forever, like this date, and the things it decides are not, like how convert fahrenheit to celsius. This is not totally random as I just returned from visiting my sister in Egypt where the temperature was 45 ° celsius and all my brain could figure out was that it was over 100 ° fahrenheit. I’m so totally off topic….
On the anniversary of this occasion, I thought it might be fun to see what Zack looked like on this date five years ago. Here he is on the drive home from the hospital.
Such a crazy scary time in our lives and the beginning of our journey into medical oddities. It was fitting then that, on this day five years later, we found ourselves meeting with Zack’s surgeon to talk about his crazy intestines.
If you are following Zack’s story, you will remember that he had a fluoroscopy test done the last day of May. We got the results from Zack’s GI doctor mid June, but I was away. Our GI’s advice was to have Zack evaluated by the surgeon for consideration of correcting the narrowing seen on the imaging and to get him back on their radar…and so we did.
Zack’s surgeon and I talked for quite a long time about quite a few things. He confirmed that there are indeed two areas of narrowing in Zack’s small bowel. One is very near his stomach and I totally forgot to ask where the other one is. Strange for me, I know. For some reason, I was completely freaked out that there was a narrowing by his stomach. I could not figure out how they would fix that and allow it to heal and still be able to feed Zack. All that worrying for nothing (I need to quit with the worrying) as the surgeon said it is in a spot that is able to be fixed. The issue is figuring out what our threshold for fixing it is. I told him that Jim and I do not want to fix it until we have to and so that is our plan, for now.
One of the things Z’s surgeon said is that the narrowing could be from adhesions. In all of Zack’s previous surgeries, he has had little to no adhesions. His surgeons have all been surprised by this given the child has had 10 abdominal surgeries at this point. However, it would not be surprising if this is the case now. His surgeon said that the next time Zack is opened up, it is not going to be a little surgery. I did not ask many questions about that because I did not want to think about it yet. When your child has wonky things going on, sometimes it is best to try to just deal with today. If you know me, please stop laughing now. I realize I am almost certainly the worst at this, but sometimes I CAN actually do it. Usually when thinking about it overwhelms me.
We also discussed how long it took for the barium to come out of Zack’s ostomy. Although the radiologist suggested it was slow motility, it was actually showing Zack intermittently obstructing. Z’s GI here and his surgeon in Boston have said this all along, but now we have proof. Actually, Jim and I see proof quite often when Z goes 8-9 hours with no output, has belly pain and a distended tummy. Proof means nothing though when nobody can say why it is happening or what the heck to do about it. Since it has been resolving on its own, we do not need to do anything…but it is still not normal.
This not normal stuff is what has been bothering me for a long time. I spoke to his surgeon about when we began this journey and how it was to give his colon a rest with the hope that it would begin to function properly again. Instead, it stopped functioning altogether. That was “fine” because a person can live without their colon. At that time we also knew that his small bowel was functioning properly.
Since that time his small bowel has been having issues. First with the obstructions which were mechanical in nature, so fixable and not expected to be related to bowel function. Then the prolapsing began and it was intense and severe. Up to nine inches of intestines out daily from November 2013 until June 2014 with a few weeks breaks with revisions. Pretty significant prolapsing again after each subsequent surgery until July 2016. Since that time Zack has “only” had on average 3-4 prolapses a month, but prolapsing intestines are not normal. Lately (the last few years), he has been having these intermittent obstructions and belly pain.
I went over all of this with his surgeon and told him my fear that his once seemingly normal small bowel is now having issues. He was sympathetic and agreed that Zack’s small bowel is indeed having issues. I told him I was worried that what happened with his colon might happen with his small bowel. He said, “Don’t go home and google this, but that can happen.” He also said that it would be extremely rare. I have tried not to think too much about that, but I’m thinking about it right now! We talked about this for a bit and about the fact that there are lots of “heavy hitting things” we have not tried yet up to and including small bowel transplants. He was in no way suggesting that Zack needs a small bowel transplant, but just the fact that we were talking about small bowel transplants as an extreme option for my child was surreal.
When Zack talked with his surgeon, his surgeon asked me if I felt his speech was less clear. I told him that I had noticed that since I returned from my trip, but thought it might just have been because I had been away from Zack for a few days. That got him asking about Zack’s speech, his school year, and a couple of other things. Then we talked about what genetic testing we have had done so far. Zack’s surgeon thinks that whatever is going on with Zack is going on cross systems in his body. His Kennedy Krieger doctor has been saying this all along. He said that genetic testing has improved a lot in the 6 years since Z’s last test and suggested we do a much more involved test. We have a referral in for the geneticist to begin that process in the near future.
We also discussed having Zack more closely followed for now. Those narrowings in his intestines are still problematic. Both his GI and surgeon want us to bring him in for an urgent fluoroscopy if his pain returns and we have instructions to have a low threshold for waiting to come in for that. His surgeon will be out of the country next month. However, he has left instructions that he is to be contacted directly if Zack comes in to the ED. I am hopeful that will not happen. We will see him again once he returns at the beginning of August.
Jim and Zack both reported that Z’s belly did pretty well while I was gone. It hurt quite a bit today. I told Zack that maybe I should go back on vacation so that his belly would stop hurting. But seriously, we have noticed that Zack has not prolapsed since his fluoroscopy and that his belly pain has been less as well. I told both doctors that Jim and I have noticed a difference in pain and prolapsing after these tests. Although it does not make sense, it could be that the barium is opening up a partial obstruction. It is out of the box thinking and clearly I am not a doctor, but somehow he feels better for a short time after having fluoroscopy studies.
Whew. That is a lot of information. Thank you for sticking with me through this long and involved post. Sometimes writing this blog is a great way for me to brain dump all of the things I just learned. It helps me process them, although whether I process them accurately remains to be seen. It is immensely helpful to me, however, when I look back on my posts. I am able to remember details that would have been forever lost in my brain and replaced by random dates and phone numbers and songs from the 80’s. It also helps keep my family happy and updated and off my back….just kidding…mostly.
I leave you with a few pictures of Zack’s summer so far. We are looking forward to a relaxing summer of playing outside, days at the pool and quiet intestines!
Zack and his pup.