G.I. Appt, More Tests Ordered

We saw Garrett's pediatric G.I. specialist yesterday in Boise. First of all, I love this nurse practitioner he sees!! She is kind, listening, understanding, and very curious. She investigates Mitochondrial Disease on her own in her spare time and has even referred kiddos out who have ended up with Mito dx!!!!

So here's where we are:

1. Poop therapy is over. Garrett has gained the ability to properly use his pelvic floor muscles to the satisfaction of his physical therapist he has seen since October. However, even though his muscles are cooperating, no poop comes out on the toilet even with use of lots of laxatives to help him time the poop. Seems the laxatives no longer work on him. They don't even cause any cramping.

2. G.I. specialist has read lots on Mito and believes that we should hold off on any pressuring Garrett to poop on the toilet. She thinks there may be nerve damage or nerves not working properly that are causing things above the internal sphincter not to work. He has no control over this......and may never.

3. G.I. specialist has recommended some testing, and we will start with an MRI to rule out a tethered spinal cord. Likely that is not the issue, but she believes it is worth ruling-out. She thinks his poop issues may be like his ears....nerves not working properly. And if the nerves are shot, there isn't much we can do about it.

4. G.I. also wants us to see urology since Garrett has days of leaking urine all day and then still soaking his pants multiple times on one day, then going on the toilet fine for days. Since the MRI will be done under anesthesia, G.I. says she would like to see if urology would like to add on any testing in the nerve area for Garrett's issues with urine.

Looks like the MRI is currently scheduled for February 21 with the urology appointment on February 14. Lovely way to spend Valentine's Day. Sorry, I am grumpy!! Sort of how we spent New Year's Eve camped out on the floor of a small bathroom with Garrett hooked up to the poop therapy computer trying to time a poop for bedtime. Fail.

So I feel in my gut that we are about to give up on the whole poop deal. Or maybe I am hoping we can give up.....not on Garrett, but on pushing him to do something I truly do not think he has the ability to do.

I just would like us to have a focus. Or not. Let's either keep pushing these therapies weekly, taking him out of school, burning gas, spending one day per week out of pocket and get this toilet training done. But therapy said it's all they can do, and nothing has changed for pooping.

I am okay with someone telling us Garrett will just be in diapers forever for his stool. I really am. No,
I'm not. Well, I am from the point of Garrett needing to be let-up on if he cannot poop on demand ever. But it is a HUGE milestone give-up. Who am I kidding. My son is seven and a half and cannot poop on a toilet. Should have had more realistic hopes, I guess, but then I didn't want to "give up on him."

The reality keeps sinking in more deeply. Gosh I love this kid. I will change diapers forever, live inpatient with him should that time come, and give up every fiber of my being to keep him happy and healthy. But hearing of nerve loss and such is truly disconcerning. What's going on or NOT going on in his little body, and is this progression? It makes sense if he has nerve damage in his inner ear that he could have it in other areas. Simple.

Goodnight.
CL