The last month hasn't been an easy one. It started with the normal winter viruses, and for Micah turned much bigger. Our family all got a winter stomach bug around the beginning of December, nothing big and most of the people in our area got it. After a while of Micah having it, though, we began to get concerned. He would vomit up everything given to him and after a while he was refusing to eat.
With Hirschsprung's Disease it isn't uncommon for a simple virus to effect if GI system, or for a virus to turn into enterocolitis. Even a cold could do this to him sometimes. We try to be very careful - even limiting how many people we see because even if somebody isn't sick they could be carrying something. His reactions to any given virus could range from normal, to slowing down his digestion and him having no appetite for a few days, or if we're unlucky it could turn into enterocolitis. A brief description of Hirschsprung's Associated Enterocolitis (from http://research.peds.wustl.edu/) is: "Enterocolitis is a potentially dangerous problem for children with Hirschsprung disease. Symptoms may worsen over the course of hours and include "explosive", foul smelling or bloody diarrhea, abdominal distension, lethargy and fever. If a rectal exam is performed there may also be an "explosive" release of gas or stool. In some cases of enterocolitis, bacteria can enter the blood stream from the bowel to cause sepsis, a problem that can be fatal."
When we called the surgeons office at the hospital they were able to get him in, but his normal surgeon wasn't working and wouldn't be in for a few days. It was now two weeks after our first December ER visit and Micah hadn't been eating hardly anything. He had lost some weight, wasn't overly interested in playing, and more often than not he just wanted to be held. He did have periods of time were he would play and be happy, but not like he normally does. We were enthusiastic that the surgeons would be able to help us and that he would finally start feeling better. Shortly into our appointment we started to feel much less hopeful. It became clear that not only did the surgeon not usually work with babies and toddlers, but he knew very very little about Hirschsprung's Disease. We left unimpressed and ended up in the ER again later that week.
When we were finally able to see our surgeon in office Micah was laying in my lap, cheeks flushed, throwing up, lethargic and very very ill. We were desperate at this point because most of what had been done for him when we had been taking him in was rehydrating him and then sending him home. Our surgeon didn't even do a physical exam at that appointment, she hospitalized him immediately. After blood tests, x-rays, and many other tests it was confirmed he had enterocolitis and his Alkaline Phosphate level was at 1377.
That day they started Micah on a strong antibiotic and upped his rectal irrigations to 3x per day (we were already doing 2x per day at home, these help to wash bacteria out of his colon). They also put him on intestional rest, which means no eating or drinking. Because of this (and because he had eaten basically nothing at home the past 3 weeks. Yes it was 3 weeks by this point.) they put in a picc line and started him on TPN and lipids.
Micah was in the hospital for about a week, which was hard on us as a family. Even though it was draining to have him there, and to be there all day with him, we were VERY relieved that he was finally getting the treatment he needed to feel better. He started acting like himself a few days after arriving there, and I swear by the time we went home he had more energy than BEFORE he got sick!
Even now that we're home I'm still pretty angry about his lack of treatment. I feel like if he had been treated right away then he wouldn't have been in the hospital for a week, and even if he had been hospitalized it would have been for only a couple of days most likely. I don't know this for sure, but that's how I feel. I still love this hospital to death. They have been very good to us and given him a much better quality of life. I feel unlucky to have met so many that didn't know how to treat his disease, but treated him anyway. Things like this happen in every hospital, and now I know to be more assertive going forward.
At the moment, Micah is doing great! His digestion is still a bit slow but getting back to normal every day. He has an incredible amount of energy! It's great to see him getting back to himself. He has some follow up appointments which I'm sure will go good.
I guess it's just a reminder that with his disease it's a marathon, not a sprint. There won't be an immediate cure all, but hopefully with time he'll get better and better with much less risk of complications. Even this past year I've seen him do better than his first year. Hopefully this next year will be even better!
