I feel like the hype around Gannon’s appointment is not going to live up to what the actual appointment was. I’m just trying to manage expectations here.
So remember Gannon’s procedure? The rectal catheter and the contrast and the xrays? Remember he cleaned out afterwards? His tummy immediately was SOFT and his skin was so wrinkled – not taught like a balloon.
With various other interventions (a little too much to get into depth) he has continued to improve over the weekend to where now his belly looks normalish, he isn’t crying when he poops, we are overall pleased with the progress we’ve made.
We met with the pediatric surgeon and his team who were absolutely awesome. They throughly addresses every concern we had.
First of all, they AREN’T as concerned with the functionality of his anus/rectum which was a concern. As it turns out that was the only reason they even consulted surgery.
Gannon’s rectum/sigmoid colon is on the right side of his abdomen which is unusual but is okay.
Gannon may have “lazy intestines” and low motility which there actually isn’t a ton of research on. There are hospitals in Dublin and Greenland that can properly work up the nerve function and muscular function of the intestines but obviously not in the USA.
Prune belly syndrome is almost completely off the table – they say his belly just isn’t wrinkly enough. They said there could maybe possibly be some kind of variant but the kidneys look good.
Gannon will have the testicular surgery in January.
Why isn’t Gannon able to sit up by himself? We aren’t sure. We are going to monitor it. 10 months and we should be worried. He will be 8 months on the 25th.
We are going to keep our speech/swallowing evaluation for next Thursday.
Why is Gannon’s belly so big? Imagine a balloon that you blew up and deflated. It’s all stretched out still. That’s what they think has happened to Gannon’s colon and abdominal muscles. They think once his belly has been decompressed for several WEEKS we will start to see improvement. This includes keeping his stools soft.
A condition called Abdomino-phrenic dyssynergia is a failure of the abdominal wall muscle contraction and diaphragmatic relaxation to limit abdominal distension was brought up and talked about. This would explain a quiet cry and abdominal distention. Strengthening the abdominal muscles good help this but they weren’t ready to diagnose him with it.
We are on the wait and see schedule but that’s OKAY. We are going to try this for a few weeks and report back.
Gannon is HAPPY and CONTENT and doesn’t seem to be in PAIN.