We had a crappy appt last week with genetics. It was crappy for several reasons but she added 3 more meds to his mito cocktail. Then she thinks his hypoxia can be related to his dysautonomia so she's contacting his cardio and requesting a 21 day holter moniter but instead of the one with the stickies all over this one is a needle they put in his chest and he carries a small battery pack. Yeah totally freaking out about that but they could be able to better regulate his heartrate (been in the 40's lately) and possibly treat and fix his hypoxia which would be phenominal. But this means more appts and more crap. We have to get our blood drawn for whole exome sequencing too, all 3 of us.
Tys hypoxia is getting worse which is just frustrating as hell! I want it to end! He's been hitting low 60's and 70's during the day after being really active and on average is just sitting at 90-93 during the day, pedi says we need to keep him above 92 so increasing time on the oxygen and needing to call pulm and let them know what's going on. So again, having to call another Dr and probably another appt.
Then stooling. Ugh. Distention is back and Ty is having a really hard time pooping. He can't get it out. We have upped his miralax, upped his senna, even doing magnesium citrate daily for the last few days and not helping! Only thing helping move some are enemas. Ty *HATES* the enemas. I don't blame him! But he fights it so bad, its just hell for all of us. We think at this point he needs a clean out. You can feel the stool in his stomach. It's just miserable. And again requiring another call into GI this week alone, most likely needing an xray. Just so done with all of this! I hate not being able to fix this on our own. We tried, only reason I called GI earlier this week was to find out what port to put the mag citrate in, his j or g port. We've been battling this all month. But I wish it were just easy to take care of. I feel like a nurse, not a mom, and like the drs are more of a parent than I am and I feel like a failure having to go to drs just to help Ty do the most basic of functions like eat, breath, and poop.
Ever just want to stop it all and go off the grid and live in a cave?!