(This is going to be a cliff notes version as I really should be studying for finals…)
Cohen had a Barium Enema test done today to see what is going on with his little belly. John and I both accompanied him on this adventure. We were instructed to not give Cohen anything to eat 4 hours prior to the 11:30 exam time. He woke up at 4am and I fed him and then I tried to wake him up and feed him again at 7am before I left for class, but he wanted nothing to do with me or my boob J On my way home from class I thought for sure I’d walk into the house and see John on the couch with a beer and Cohen in his crib upstairs crying…but surprisingly that wasn’t the case. John was busy cleaning the house and Cohen was asleep in his swing. It was very apparent that he was having some belly issues considering it was 11am and his last meal was at 4am.
The procedure was pretty quick. They inserted a tube in his rear end and hung an IV bag full of barium and let it flow into his body with the aid of the Radiologist moving the tubing to get the barium in the correct space. The Radiologist was a super high energy little man and it felt like he was bouncing all over the place. With that presence, it made us a little nervous when he seemed agitated at one point during the procedure. He kept having the nurse and I turn Cohen on his side, on his back, on to his other side, over and over for a good 5-10 minutes. Cohen was screaming during this part. All of a sudden he and the doctor settled down and the procedure continued. Twenty minutes later the tube was removed, the doctor looked at the screen and said “great” and was out of the room.
The techs took some pictures of his belly and then had us wait around for an hour to see if Cohen could poop out some of the barium in order for them to get an empty colon picture. An hour later and no poop, so they took a picture anyway and told us to return in 3 hours. I went back with Cohen at 4pm and they got another picture of his belly. He still had not pooped out any of the remaining barium, but that should occur over time…yeah right.
After that picture the Radiologist brought me into his office to discuss some things. I entered the room and pictures of my little baby’s insides were hanging up all over. The Radiologist said that we are dealing with a couple of things. First off, he doesn’t appear to have classical Hirschprung’s Disease (which made me breathe a quick sigh of relief…), but he may have the rarest form of the disease. (of course he does, he is my son…). You see, in classical Hirschprung’s the missing nerves are at the top of the colon and the intestines are inflamed and the colon is of normal size, and in Cohen’s case, as is the case with the rare form of the disease, the intestines are of normal size and the colon is inflamed (because the missing nerves are at the end of the colon). It sounds like somewhat of an answer, but the Radiologist is more concerned about another area of Cohen’s colon and will rule out or confirm Hirschprung’s after this other problem is dealt with.
When babies are formed in utero all of the insides are formed outside of the body and they then fold in through the umbilical hole in a very precise manner. When Cohen was forming, the doctor believes that Cohen’s colon folded on top of itself making a kink in the colon. The above mentioned movement of moving Cohen on his side back and forth during the procedure was because the barium reached a point in his colon and just stopped. The doctor was trying to get the barium to “punch through” the kink and it wasn’t happening. It finally did after a lot of stimulation and that is when both the doctor and Cohen calmed down as the barium was able to move throughout the rest of the colon. The doctor said he was hopeful that he fixed the kink with the barium, but then said it was highly unlikely because he reviewed Cohen’s medical record and it appears that this has been happening since birth: A month of constipation and explosive and irregular poop, followed by a month of seemingly more normal bowel movements, then back to irregular and abnormal bowel function. The doctor is unsure if it is actually a kink due to a fold or if there is another organ that has made a band across that section of bowel and is making the kink.
Now what? Well the Radiologist said we could probably wait to see if the barium really did fix the kink, but otherwise there would an exploratory surgery needed in order to fully grasp what is going on. John and I discussed it and we are not interested in waiting around to see how things go. This may sound funny to some people, but for use, the risks involved in waiting clearly outweigh those of a simple(ish, more on that later) laparoscopic procedure. As he stands right now, Cohen has a very high risk of perforating his colon with the amount of pressure and back up of his bowels. The situation can become very emergent and grave should that happen. Cohen has an appointment with his doctor on 7/7 and we are going to get a referral to a pediatric gastroenterologist as soon as possible to get the ball rolling on his diagnosis and treatment.
All in all we learned a lot and nothing all at the same time. I will keep you all posted as we gather more information. Thank you for all the prayers and love and support for our little man. I promise to do a much better and more detailed explanation of things after my finals!
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