Just a little update and request for prayers. Will had an MRI of the brain done this morning. He was, as always, a trooper.
I went a little "postal" through this process because of a variety of roadblocks, insurance, people not listening to me (can you imagine?) and so on, but at the end of today we are home and Will is seemingly doing well.
So why the MRI? It's for a baseline test for something new we're going to start trying. I'll post about that later, once I know more details and can better explain.
I just hate putting Will under. He's had this allergy (??) related cough since Saturday morning and I've been anxious since then.
So why did I go postal? Well, it's a long story, but the short version is... you don't get your time slot for an MRI type thing until the day prior. So on Monday about 1 p.m. I call up to the hospital since I still haven't gotten a call and find out that his time slot is 10:30 a.m. on Tuesday.
Not fine in my book. And not a lot of time for me to try and get this fixed. From the start of this, I asked for the first appt in the morning, said whatever day they could accommodate that request I would clear my schedule. Supposedly that day was today. Well, it wasn't.
Of course, I was trying to get it switched, but then the anesthesia coordinator didn't call me back after two voice mails. Apparently, she had a family emergency and had to leave. Well, honestly, that's just not good enough.
I should have just cancelled the dang thing and rescheduled, but I felt like I had reached the point of no return. We're waiting on this MRI to start the above mentioned "new thing" and I don't want that delayed any further. Plus, I refuse to ruin his Halloween.
Why do we need/want the first appointment of the day for something like this? Well, the longer Will fasts, the worse it could be. He has a neruo metabolic disorder. Metabolic = metabolism = not eating = not a friendly combo.
There was a 7 month old ahead of us. They do it by age. So one of my "going postal" comments was something along the lines of, "so you'd rather put my child in danger of additional brain damage versus a fussy 7 month old" - of course if I was the parent of the 7 month old, the story would be different and obviously there's something likely really wrong for that 7 month old. I just wasn't in a sympathetic place.
Anyways, it was a long day. We left at 7:45 a.m. and didn't get home till about 2:30 p.m. The only nice part of the day was spending some time with Neil and running into some mito friends in town for their doctor appointments. I couldn't imagine doing this and staying in a hotel or with friends. Just adds to the stress load.
I hate anesthesia. I hate that his little hands are clenched to my shirt. I hate hearing him cry and whimper. I hate watching them put him under and his eyes rolling back. I hate waiting. I hate waiting in recovery looking for signs of life. I hate seeing him get upset because he feels funny. I hate looking at my little angel with his mouth open laying on a bed with wires and monitors and most of all I hate that he now knows what's coming. He didn't want to put on his gown because he knew what that meant.
I hate all that because it mostly just makes me go to a bad place, thinking about his death. That makes today easier in a weird way. I'm about 99.9 percent sure everything will be fine on days like today, but there will be other days when I'm not so confident. I hate that feeling.
I hate this, but I sure LOVE my little brave buddy who did so good today. He feasted tonight and I happened to find some chocolate cake for him too!
MRI resutls, not a result I'm interested in finding out. I just don't have a good feeling. But, regardless this will help us move one step further towards a proactive "new thing" that we have hopes will improve his quality of life and general health.