I'll recap the day's events, and then my wonderful mother provided a medical recap of the day. She's far more superior at that than I am and am so thankful she was able to come along.
(note, this gets a little long winded, but this is for us to remember, too, so I want to document)
We started by seeing pediatric GI specialist Dr. Kennedy at Minnesota Gastroenterology in St. Paul. Dr. Kennedy was wonderful and listened to his history, examined him, and presented us with our plans. Essentially (more detail below from my mom) plan A is for the next two weeks do a combination of laxative and fiber supplements to try and firm up his stools and eliminate the 'smearing' that happens throughout the day. We expressed concern that he doesn't even seem to know that he's going, and she wasn't overly concerned with this, saying that kids with constipation issues (again, more below) very often don't know that these smearing events are happening because it's just fluid and small amounts of stool passing around the larger stool in the bowel. We're hoping that the laxative and fiber will help control this and make for more regular stools. If we see no change or it gets worse, we're more than likely moving onto plan B which is to give him a shot of botox in the rectum to relax his muscles there, making it easier for him to hopefully control those muscles and control when he's going. The thinking is that his muscles there are extra tight, more than normal, and that's why he's maybe unable to 'learn' how to control them. The botox lasts around three months, some kids learn how to control the muscles during this time and don't need another dose of botox, some need more than one round.
So then we went to Children's in Minneapolis to have a contrast enema. Going into this, I didn't think this would be that bad since we had given him three the previous week, but, this was bad. The enemas we gave him last week were 66 ml of fluid. This was 500 ml. To give somewhat of a comparison, it's roughly a 20 oz. bottle of water. I had to stand outside because they were doing xrays at the same time, which I would argue was worse than being in the room with him. All I could do was hear him scream, versus trying to comfort him. Thankfully Bryan and my mom were in there with him. After that experience, we needed to wait for him to get rid of the enema fluid, thinking this would take like 5-10 minutes. An hour later we still had nothing so they came in to take one more xray (really were hoping to take the xray after he got rid of all the fluid). This is when he started throwing up. We first thought it was because he was just so worked up (we were forcing him to sit on the toilet, walk around, etc., to get the fluid out and he wasn't digging that and was extra tired) but the radiologist said it was probably from his stomach contracting while his bowels were contracting. Similar to women in labor feeling nauseous and throwing up, because of the contractions. Then about 15 minutes later, he started getting rid of the fluid, too. Three times in the xray room, in the elevator heading to the car, the car ride home...you get the picture. Literally every 5-15 minutes from 3:30 to about midnight, he either threw up and/or got rid of some of the enema fluid. It was terrible and there was really nothing we could do for him. He was beyond tired, but the throwing up would wake him up. This continued throughout the night but we got an hour to two hour breaks after midnight. He is in MUCH better spirits this morning, playing with his trucks, etc., which is so nice to see. Our hearts were just breaking for him yesterday.
Once his vomiting, etc., calms down today, we'll probably start the fiber and laxatives, just to get rolling on our plan. Bryan and I have self-diagnosed (because we're so qualified, of course) that he's going to need the botox. Lately he's waking up with full pants and the most fluid from the enema yesterday he got rid of overnight, making us think that when he's sleeping and fully relaxed, the muscles obviously relax too and allow things to pass. But, who knows.
Now for mom's medial recap of the day:
Connor seems to have what is called functional constipation.
Functional constipation, known as chronic idiopathic constipation (CIC), is constipation that does not have a physical (anatomical) or physiological (hormonal or other body chemistry) cause. It may have a neurological, psychological or psychosomatic cause. A person with functional constipation may be healthy, yet has difficulty defecating.
Gastroenterologist Dr. Kennedy felt best approach would be to try 2 weeks of laxative and fiber. If no improvement, she will consult with his surgeon who performed the pullthrough surgery for his Hirschsprungs. They’ve had good results with botox injection of the sphincter to help relax the muscles. Many times children only need this done once; other kids may need another treatment 3 months later when botox wears off.
Dr. Kennedy was able to get us in to Children's Hospital today for a barium enema study of the large bowel to make sure there wasn’t anything else going on. That showed that there is still a lot of stool throughout the large intestine, but nothing abnormal about the anatomy of the bowel itself. The doctor who performed the study said the anastomosis site of the pullthrough surgery for his Hirschsprungs looked very good with no restriction or narrowing. (It’s about 1/3 of the way up the bowel from the rectum, just above the sigmoid flexure.) However, she was going to look more closely at everything on the Xrays later today and would then consult with Dr. Kennedy about her findings.
A few pictures from the day...
This is a picture of the xray after they had finished putting the enema in. The doctor didn't see anything too concerning. The large part near the bottom she didn't feel was irregularly large, and then kind of going up the right side where it looks like a rubber band is around the colon, that's the site of his pull-through surgery at birth, which she thought looked really good.
And that might be my longest post, ever.