Tuesday, October 23, 2012


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.


  1. You're such an amazing mom. I hate that you have to go through such an experience but I sure am glad Will has a mama bear like you. Way to find him some chocolate cake, that makes everything better :)

  2. Oh Lori, biggest super giant hugs and chocolate cake to you. Milena and I were in a car accident today (we weren't hurt) and although I generally held it together, I was a little pissy. Frustrated, panicked about not knowing what to do (i.e. everyone tells you to use your phone to take pictures, etc. but I felt all nuts doing it esp. with the lady who hit me right there watching etc). I couldn't find the insurance card, was trying to call all the right people, and do the right things, and it was all kinds of awkward hanging out with the lady who hit me, I didn't understand which of all the tow truck drivers swarming around me was supposed to get to tow the car, etc. Sucky day. And then I read this and think what an idiot I continue to be. I hate hate hate thinking of you having to watch them put Will under and him fighting putting the gown on and all of it. A minor car accident is nothing compared to this crappy trainwreck you were handed. I know there's nothing to say, but I always manage to write a bunch of dribble here ;) I just find myself always looking for some sort of words to let you know how much you continue to impact my world view, how much I admire you, and how much I admire Will. For the record, you were absolutely reasonable to go postal about that 7 month old going first. That is a dumb rule, and it probably is NOT anything more than just the "rule" that the scheduler uses without thinking about the actual medical conditions of the children and how timing is important for someone with a metabolic condition. I am glad you continue to use that voice to protect Will's interests. I am looking forward to hearing about the "new thing" and I am glad to make a cake run for you and little buddy ANY TIME. Say the word. Hell, I'll even make one ;)

  3. We are praying for Will and your family, Lori.

  4. WOuld love to hear the new thing yall are getting into. We still can't even get into EPI-743. :( I am soo tired of waiting for my sweetpea to get in. Please let me know what is the new thing as I like to keep up with all the latest research. Thanks!! Carie Kuhn You have my email from a while ago I think, but it is cpkuhn@bellsouth.net