Tuesday, February 26, 2013

Garrett's spine MRI showed:


Ainslee comforts Garrett in recovery after his MRI. Garrett has the best sisters in the world!!!
So you may assume that is great news, and I guess in the big picture, it is good news. Great, another set of weird things going on and no physical/test evidence to explain it. Except.......the G.I. specialist called with MRI results this morning and says she believes it is as articles I have shared with her. His nerves in the colon are not properly working. Wouldn't be a big surprise since the nerves in his cochlea of his ears are already trashed. So we are right back at the beginning but were hoping for an answer. But we cannot get an answer on the genetic cause of the Mito, the brain MRIs look normal, so there's no visual reason for his delays and mental issues, and now the tummy. Nothing obvious to see on a scan. We can only guess, once again, but then again, that's lots of trademark Mito cases for ya!!!!

As I type, he is playing the Wii and I hear him filling up a pull-up. This will be the first of 7-9 of these blowouts for today since he didn't poop in the past 48 hours. Laxatives do nothing anymore, but we have been instructed to give them anyway if he goes two days without poop. So we will try that. We have added more soluble fiber and made his Miralax dose earlier in the day, at noon instead of after school. The urologist wants him drinking more at school, so he has a certain volume of daily liquid intake we shoot for, hoping to get 2/3 of that in him before lunch. When he has a bowel movement, he is always standing or lying down, but never sitting or on the toilet. His G.I. specialist calls what he has coloporesis, or stopped/delayed movement of the  colon. Garrett has "sandy poop" frequently, where it takes over a dozen baby wipes to scrape the sand off of his bum after the poop is gone. This is because he has so much that sits in his colon that it allows sediment to settle,  and when conditions are just right, the huge pressure of the weight of all the poop above the last two turns of the colon will force the sediment out also. It is crazy! 

What was most helpful is to rule out problems on the spine MRI. It was thought he could have a tethered spinal cord. Nope. So where do we go from here? Nowhere! That's not entirely true. The G.I. specialist said to lay off all attempts to toilet train for bowel movements and come see her in three months. Maybe at some point, she says, he will take a mental turn and want to try on the toilet on his own. We had him in poop therapy, and he learned to gain strong control over his pelvic floor and pushing, but that never yielded results. So now we wait, but it is good because we also relax some. We were in limbo rather to continue potty training-type exercises at home and in therapy for poop, but no more!!! So he is off the hook for now!! And it is truly a relief for me!!! It's one thing to train a child to do something they are capable of doing. It is entirely WRONG to be training a child and pushing them to do things of which they are not even capable. And he may never be capable in this area. I know God is taking care of my little boy through the amazing medical team Garrett has between Boise and Seattle!!!


No comments:

Post a Comment