Early Thanksgiving morning Dylan woke up at 3am holding to his stomach. When I looked I could tell it was distended and could hear it grumbling. Felt of his head and sure enough he was running a fever. My first thought was UH OH, this could be serious this time around. We had been through this before with re-occuring stomach bug episodes but this time it concerned us more knowing that he had a rare stricture, his bowel movements had slowed down, and we were basically not getting the medical attention that Dylan needed, we were waiting and worrying that he would get sick. Sure enough our worst night mare was coming true. All day Thanksgiving day he didn't eat much, he just wasn't himself. Time passed on, he just had some sips of juice and a bite of his favorite snack which was chicken nuggets, all day long. He went to bed early and was up at around the same time the next morning vomitting. I almost expected this just with the way things were starting out the day before. I tried keeping him hydrated, after several times vomitting through out the day I decided to call his surgeon, his office wasn't in since it was the day after Thanksgiving so I left a message and had him paged so he could call. At his previous office visits he had stressed how important it was to watch for signs of infectons or obstructions and I had that gut feeling that this is exactly what we were dealing with. I waited around after a few hours and felt that I needed to get him some kind of medical help, at this point he was weak and seemed life less, just laying around. I took him to his regular pediatrician, explained the problems he was having and he actually had enough nerve to look at me and say "Well mom, looks like you need to get him to Cincinnati sooner, theres really nothing I can do for him". I believe I probably turned every shade of red because I was so mad that he did nothing for Dylan. So here I was with a sick child and no medical help. I could only pray that this would pass and hopefully was just in fact a stomach bug.
The day went on, Dylan still refused to eat. When he did drink it would just come right back up. His dad and I were really worried at this point. I was so let down by his medical professionals that were suppose to be there for him. FINALLY, at 9 pm his surgeon returned my call, I was so relieved that finally I had someone to help. Turns out his pager had torn up, which is why he was just returning my call. I explained what was going on with Dylan, and how it was a little different than the other times he had these episodes, this time we didn't have any diarreaha and usually when Dylan would take these episodes he would have really foul smelling diarreaha. He then gave me his cell number and told me to keep a close eye on Dylan and try to get him to drink as much fluids as possible, if this was indeed a stomach virus is should subside by morning. I was told to give him a call the next morning to let him know how Dylan was. We prayed through the night that he would start feeling better. It was so heart breaking to watch Dylan, he was unlike his usual self. Usually he was the happiest, most playful toddler and this day he was just so life less. He would lay around mostly, throw up a few times, then try to get up and play but when he did he would stop lean against the wall and hold to his stomach in pain.
He didn't stop vomitting through the night, by this point he had nothing left to throw up. I called the surgeon and he told me to bring him to the hospital where he practices which was 3 hours away (yes very sad when you have to travel that far to get medical care). When we arrived at the hospital the doctor had already let them know we were coming and left orders for Dylan. We had blood work, x-ray and was started on IV fluids. Later that evening Dylan's doctor came in reviewed the x-ray and blood work. The blood work didn't show any signs of infection which was absolutely a great start, but then came the bad news, the x-ray showed 3 dilated loops in the bowels which was a sign of an obstruction. He was taken up to the floor and admitted, started on a clear liquid diet and the doctor planned on trying enemas, and then possibly a rectal biopsy to confirm if in fact it was just the stricture causing problems or if it could indeed be more Hirschsprungs left behind from the first surgery. This rectal biopsy was suggested to Dylan's surgeon by Dr. Levitt in Cincinnati, he thinks if a child is still having problems after a pull-thru surgery that this test should be done to make sure there isn't any diseased bowel left. The nurses started with enemas, it did work, which relieved alot of stool and of course pressure off of his stomach. The next day he was taken to OR and had a rectal biopsy done. His dad and I waited nervously for the results, in the mean time the doctor explained to us, that if the results came back and showed that it was just the stricture that he wasn't gonna wait to send him to Dr. Levitt that he would just do the operation himself since he felt this was causing Dylan to be so sick. We kept our fingers crossed, hoping that indeed it was just this stricture and it could be taken out and then my little Dylan could be on the road to recovery. We were certain this would be the case, we really had it in our heads that these results would show this was the only problem. We decided while Dylan was resting and feeling ok, and his grandparents were there by his bed side that we would run home (3 hours away) pack some clothes up since most likely Dylan's surgery would be the next day so we knew we would need more clothes cause we would be there a week or so after the surgery.
While at home, I got the call from the surgeon, my heart racing and my voice shakey I answered the phone as calmly as I could. Sure enough I was overwhelmed with the results, the biopsy showed more confusion, not the results the doctor wanted at all. These results showed the oppostite of what he wanted to see, he was hoping to see good ganglion cells and nerver fibers, which would mean he would be able to go ahead and remove the stricture and Dylan would be fixed. Instead they showed no nerve fibers, which he then explained to me could be Neural Intestinal Dysplasia. These nerve fibers are the nerves that send messages to the brain that the colon is full and indeed needs to empty which signals the ganglion cells to do their job and start moving stool through the large intestine and then out the rectum......So here we were with yet another problem and possible different diagnosis than Hirschsprungs Disease.
Dylan's doctor then decided it was a good idea to call in the "big shots" at Cincinnati, he knew he could not deal with yet another rare problem, and felt that Dr. Levitt would be the only one to take care of this problem for Dylan.
We talked with Dylan's doctor more about the results, and his hopes of Dr. Levitt being able to help Dylan once we got there. He had us transferred the next morning. We were off to see yet another doctor thinking we were in route of finding out the problem and getting it fixed...what we didn't know is that once arriving at Cincinnati Children's Hospital and seeing Dr. Levitt, we were going to get a completely different opinion and a whole other diagnosis.