We ended up talking with Eli's primary doc again on the choking. The newest meds have made no difference. The last guess is the robinul. They are increasing his dose over the rest of the week and then if that's not enough then another increase on friday. If that still doesn't make a difference then they will do some exploratory things under anesthesia to try and figure out if we are missing something. We were here so long ago and are not ready to be here again.
Eli also appears to be having a potential reaction to the neurotin. We have seen what are possibly breakthrough absent seizures as well as he is either very sluggish or very intense. He is also tripping and falling and running into things way more often than normal. Neurologically something has definitely shifted. He's also struggling with body balancing of fluids. He's bloated, but dry.
I met with my orthopedic surgeon again today. My hand incision has been struggling and continues to open up. He asked me today if I have been diagnosed with a thyroid issue or a metabolic issue as that's when he sees these issues. I'm also struggling to use my hand and the muscles are tight, my thumb is now pulling into my palm some and I have limited wrists movement. Still having trouble gripping things and major loss of strength. It hit me like a ton of bricks when he asked if I had a metabolic issue. He is one of the docs that hasn't been involved in the Mito workup and knew nothing about the suspicion. It terrifies me that so many doctors are independantly coming to the same damn conclusion. The surgeon has taught me a new way to steri strip and is sending me to some intensive OT. I start the OT on Monday.
Some of my testing has come back and my primary doc is calling around to get me into a Geneticist. We know how much time this takes, but are hoping we can get this done fairly quickly.
We will also be meeting with a lawyer this week. We will be drawing up a will. It's something I feel we shouldn't avoid. I think I will feel more comfortable if this is all done and prepared as a just in case. I never imagined that at 33yrs old that this is something I would ever consider. I don't want to think about these things, let alone say them out loud, and write them down. But alas here I am. No we don't think I will die. But yes we are being realistic and knowing that some major things are coming up and with any major thing comes great risk for complications and unexpected turns. We want to be prepared. We have that responsibility as parents to be prepared. We are now even more thankful that we have been seeing a grief counselor for months, before my journey really began for myself. She has been an amazing support and a place for me to openly state my thoughts and fears, and be able to plan and talk out loud.
Right now we are chugging along best we can. We have begun Christmas decorating and are trying to throw ourselves into the holidays as much as we can. I am getting a better control over my emotions (atleast at this point) and have done a better job of staying in the numb realm during the main parts of the day and only fully letting the emotions roll thru when the kids are either at school or late at night. This may not be the options that therapists all push for, but nothing changes the fact that I'm the mom to 5 young children...4 of which already have to deal with the reality of their little brothers illnesses.
I will continue to keep some updates coming over the next few days.
And don't forget to check out the post just below this one for a slideshow of our family photos. They turned out absolutely amazing!!!