We tried to beat the ice storm on Tuesday. After I got off work at 7 pm, we drove the 2 hours down to Iowa City and got a hotel. Thank goodness we did (thanks for the suggestion mom) because the ice was THICK and many of the school districts were closed because of it.
Gannon’s appointment yesterday was okay. We don’t “love” our GI doctor.
I was hoping for “the answer” which wasn’t fair. That’s not reasonable to expect right now.
University of Iowa has done what they can. I had the conversation with our GI doctor. I said I don’t feel like we’ve been taken seriously. She got defensive and said “Well I’ve referred you to urology and surgery and more imaging isn’t helpful right now.” Which is true.
I expected the University of Iowa to be somewhere we could be officially diagnosed but they don’t have a motility clinic and they are also limited. All they can do is refer us on.
Gannon’s past two weeks have been complicated by an upper respiratory virus and possibly a stomach bug. It’s hard to say what is causing his vomiting. Maybe it’s related to his belly, maybe it is something different entirely, maybes it’s also related to a virus. All I know is Gannnon does better on formula than with real food. She dismissed that and told us to feed him whatever.
I asked how we can relieve his distention now. She said there isn’t much we can do. That’s when I asked about a G tube or a J tube (a surgically placed tube that goes directly into the bowels or stomach to relieve air and possibly deliver feedings). She said in her experience it doesn’t make much of a difference in kids like this. I have a feeling the motility clinic will say differently but again, we aren’t at the motility clinic.
That’s when I told her that his distention is a concern I need addressed before we leave today. She offered a rectal catheter but she said “I don’t think this will work or make much of a difference.”
The catheter is inserted into the rectum. It has perforations in the tubing to let gas out. Within five minutes, the room smelled like gas and Gannon had a noticeable decrease in his abdominal distention.
Our GI doctor said that the rectal catheter works well with treating Hershprungs kiddos and because it is working well for Gannon that leads her to believe this could be the chronic intestinal pseudo obstruction (CIPO). His distended bladder is also a sign of CIPO. Also his redundant or “extra” colon is also a sign of CIPO.
Just a refresher – they have tested Gannon over and over again for Hershprungs disease. That would mean there are NO nerves in the bowels/colon. That was what we were admitted for at St Marys. A biopsy ruled that out. CIPO is when the nerves or the bowel/colon don’t work. Manometry can test for that.
She also noted his liver is larger than normal on the X-ray. I’m typing this as we are waiting for an ultrasound of his liver. She said maybe this could be contributing to his distention.
I asked about genetic testing. She said the motility clinic would be able to tell us if that is a good option for Gannon.
We are planning on also doing an EGD (upper scope – like a colonoscopy only looking at his esophagus and stomach) when he has his testicle surgery in February. This will look at his upper GI tract and test for abnormalities. They may take a few biopsies then too.
Craig came with to this appointment which was so great. I like to have a second set of ears and I feel more confident being a stronger advocate for Gannon when I have someone with me.
I may come off as “fierce” or “strong” but when it came time to actually stand up to his GI doctor and say “I feel like we aren’t being taken seriously” it came out as “I just don’t know. I just….I don’t know…I feel like maybe we should be doing more….I don’t know.”
It’s hard. I don’t know as much as her. I really don’t. But I know Gannon. And I know this isn’t normal.
And I know what I’ve been reading on my CIPO support group. They are all an expert on this condition. They know the questions to ask and what helps and what doesn’t. They give me the courage to advocate.
I’m finishing this post as we are on our way home. The ultrasound took FOREVER. They kept coming back to his liver over and over again. Then someone else came in and took more pictures. It honestly took about an hour.
Gannon was so so so good considering how long it took! The lights on the ceiling helped too.
Milawakee is reviewing his case on Tuesday. I’ve been emailing Carly at the GI Access center there. She’s working on getting prior authorization from insurance and accepting the referral as well. She is one of those “behind the scenes” who holds a department together and I can tell she knows her stuff!
It’s a guessing game as to how long it will take to get into Milwaukee. Gannon’s doctor said she’s referred patients to Nationwide in Columbus Ohio and it’s taken 4 months to actually get in and be scheduled. Columbus’s motility program is also highly recommended but that’s about 10 hours from us vs. just 4 hours. Mayo (where we started this whole mess) is only 1.5 hours away but we weren’t impressed with them and they can’t do the full tract manometry that Gannon needs. So Milwaukee it is.
That’s all I know for now. Thanks for your well wishes. Gannon appreciates it too!
P.S. Gannon has always had “floaters” or “debris” in his bladder along with a distended bladder. The MD who finished up Gannon’s ultrasound noted that again today and showed them to us. Usually it is indicative of an infection but Gannon has never had one. Of course that never made it on the ultrasound report. All that was noted on the ultrasound of his organs was a “mildly prominent lover and spleen.” Whatever that means.