Wednesday, October 3, 2012

Quick Check In

I apologize for missing Mito week.  Eli ended up with 14 appts, 6 therapies, I made 36 phone calls, signed for 5 deliveries, gave 336 medications, 14 shots, 2 lab draws, 2 dressing changes, 34 breathing treatments, and more medical care than I can even begin to list. 

Last week Eli was admitted to the hospital for 24 hrs.  His lab work has been a mess.  We ended up needing to change his IV fluids.  He is now on D5 NS so that he is always getting glucose and salt.  It seems to be helping give some more consistency to his sugars.  We are still waiting for them to get his Mickey GJ tube ordered so we can get that changed out as the valve is again broken and his body is again eating thru the silicone.  Also Eli's geneticist / Mito doctor is leaving the country.  This means more big changes on the horizon for Eli. 

Final news.  My doctor was finally able to get me into the neurologist this last week.  He ran an EMG on both arms.  He is unsure how I'm even able to use my right arm at all.  I told him I hardly am.  I have severe motor nerve, sensory nerve, and muscle damage in my right hand, arm, elbow, shoulder, and neck.  My left hand and arm and elbow only have some mild sensory nerve damage.  He said I definitely need surgery.  We also discussed my migraines.  He made some adjustments to my meds.  He is sending me for an MRI and is concerned about the severerity and frequency.  My vision is struggling and so is my hearing.  I can't remember the last time I didn't have a headache.  He is meeting with me next week to come up with a firm plan and get everything scheduled.  More info but right now I'm not ready to go into full detail. 

Please keep our family in your thoughts as we navigate continually uncharted waters. 

1 comment:

Keely Miller said...

Sounds like busy few weeks, but I am pretty sure, this is your norm. I am so sorry, but you are doing the best job you can do, as a mom. You are an awesome mom:)
I am sorry that your health is failing. Not knowing your history, could there be a chance you have Mito also???
My prayers as you go through this journey. It is a journey I would not want on anyone. I have been severely disabled since 2003 and it is a hard road. I have learned so much on this road and have learned to enjoy the little things and the smaller victories. You can do this and I am so thankful that you have such good support. Good support is always a God send.
You and your family are in my prayers. praying for much brighter days for you all. Big Hugs!!!