So it's been a week since I've posted, not that I feel all that bad about it because I post when I can or when I feel like it whatever comes first. My week was so fazzled I'm surprised to be fuctioning at all at this point so here goes...
Today was a cold, rainy fall day and since we had gone apple picking yesterday I had promised the girls that we would make an apple pie. What I had not calculated into that promise was the fact that I had 4 loads of laundry to do, 2 sinks full of dishes calling my name, a floor that was missing the broom in a big way, all of the kids clothes to sort, organize and rearrange for the fall while calculating what I still needed to buy at our upcoming Mom2Mom sale on Saturday and oh yes, pack to go camping for the weekend and all before I was supposed to leave to run a couple errands and then meet up with friends for a long awaited "mom's night out". I had also forgotten that my beloved apple pealer, corer, slicer extrodinaire was packed away in our storage trailer 20 minutes away. Pealing, coring and slicing 12 apples by hand can't be that bad right? Wrong, I could have done the job on a whole bushel of apples with the machine for what it took me by hand for 12! But by golly this apple pie was going to be made! Afterall, I had told the girls that it was going to be our school for the day. Princess was to help read the recipe, count out the items, learn about fractions with measuring and organize ingredient categories. Pudge was to learn about different smells and textures, the colors of the different apples and how to properly lick sugared syrup off a spoon. Other then getting himself covered in flour Boo wasn't as interested in the process as much as he was in trying to sneak outside into the rain whenever I had to go out to the garage for something. (Remember, we have no basement so our garage is my storage, extended pantry and cold pack room.) What is it with boys and puddles anyway?!?
Speaking of Boo he had his EMG done on Monday which was....frustrating... It started fine in the prep room and they got the IV in after only the second try so wheeled us into the proceedure room where his IV blew just as they were trying to get the sedation in. He got just enough to get irritated not enough to knock him out. It took FIVE more tries to get it in again. 4 nurses and the sedation doc from PICU were working at it. They had to start O2 because his sats were dropping and his HR was in the 180's. Boo's screaming his head off and I'm ready to cancel the whole thing right before they got it in and the WHOLE TIME this is happening the Neurologist is in the corner of the room talking to his assistant about going to ArtPrize when and where do go for dinner and plans for the weekend blah blah blah. I understand there was nothing he could do to help but gosh either shut up or step out!
So then the test starts, he tests one arm and one leg for the non needle nerve part and three pokes on one leg for the muscle part. He couln't figure out where certain wires connected on the machine and often hovered over buttons and then push a different one and even admitted "We don't use this machine very often so sorry if we seem incompetent".....Say WHAT?!? You are telling me this at the end of a test that my son was just put under nearly an hour for after 7 attempts at an IV?!? This was an important test of Boo's nerve and muscle function that was quite invasive and now I'm not even confident that it will even be accurate! I'm still working on the "your fired!" letter but it's going to be sent! It took Boo twice as long as expected to recover his walking abilities and his O2 levels stayed low normal for 3 days straight. Then I get a call from one of his other specialists saying they want to schedule a repeat MRI and because of the Mito think it should be done under general sedation. Great! But this time let's admit him because I can't handle the stress of the aftermath!
Oh yes, we also heard from the Dr. at NYU who was being consulted about all this possibly NOT being Mito but primary Dysautonomia instead. Her note was pretty short and to summarize it even further she also believes that Boo has Mito and needs the muscle biopsy at Cleveland Clinic. It was the nail in the coffin for Hubby and in a way a confirming blow for me too. This lady knows her stuff, THE best in her field. While we've suspected it for a long time now and he has been treated medically as having Mito, since it's not confirmed we hold on to a lot of hope that it's not but rather something totally curable. As more and more top professionals agree with each other that hope slips away. So I put the call in to get the biopsy scheduled. Then I finished up the pies, sorted the clothes, folded the laundry did the dish, ran my errands, drank my coffee and cried in my car all the way to the restaurant to meet up with my friends. I fixed up my makeup and was fine the rest of the evening. They never even knew, which is what I wanted for tonight. To pretend things were normal. To pretend that I wasn't scared that things might get worse, that Boo's life might be shortened. God is so gracious though and reminded right as I was walking in that He will take care of Boo and me like He always has as long as I trust Him one day at a time.
This was a marathon blog I admit but it's what's going on here and here is busy!