Saturday, December 15, 2012

eye typed this

Welcome back my friends to the blog that i began so long ago.  Today i choose not to focus on the oh so many frustrating aspects of  living with ALS and there are some real crazy things myself and other PALS and their families deal with daily.
The reason so much time has elapsed between entries is that i lost most of the ability to move my hands and arms back in March.  Although precious little progress has been towards a cure or even an effective treatment for this disease, the advances in equipment and technology have been miraculous.  After going into respiratory failure in January, i elected to go on a ventilator and the Respironics Trilogy is the vent i use at home.  i  am fortunate that i do not have to stay on the vent full time, but the compact size we can easily take it with us so we can get out and about.  The power rehab chair and handicap van provide an easy way to get to all the places i need and want  to go.  Last is my newest miracle, the Tobii communication device, which will provide my voice when and if  i lose my ability to speak.  For now the device has an eye gaze tracking system that allowed me to type this entire blog entry using my eyes and i look forward to sharing more of my thoughts and experiences on this journey.  ALS still sucks but now i have the tools to live to my fullest ability, and i don't plan on wasting a minute of  it. 

Monday, May 28, 2012

Where ya been??? - Part 1

     Well, it certainly has been way too long since I have posted here. Sorry to keep you waiting. We had a short hospital stay at the end of October and then the holidays were upon us. We travelled to South Carolina to spend Thanksgiving with my sister and her family, and it was really special for us because it was the first time in 3 years we had all 5 children together with their families. After that, Christmas and and the New Year brought more family visits. And everything was going well.

     Then on January 25th, I started to experience some dizziness and we determined a trip to the hospital was in order. Little did I know what that trip would eventually entail. While being loaded into the ambulance, I started to experience some shortness of breath, and honestly I don't remember a whole lot after that. So, Gina will help fill in the rest of the story.

  Here I go:
      It is exactly 5.1 miles from our back door to the door of Our Lady of Lourdes Medical Center Emergency Room. When we reached the loading dock, I got out of the front of the ambulance and the back door opened and the EMT handed me a oxygen tank. I asked "What is this for?" and then he opened the other door. Kevin looked like a fish on the dock, gasping for breath. He couldn't catch his breath for anything. The ER doc  wanted to have a CT done on Kev's lungs but they couldn't lay him flat. (Kevin: One of the first things we are told to do when diagnosed is to prepare ourselves and our families for when the end comes; we had those conversations with our children letting them know I had decided NOT to be ventilated.)
     The ER doc told me he wanted to intubate Kevin and I knew that was not what he wanted. So I told him our end of life plans, and he immediately said "lets go talk to Kevin". To my surprise, Kevin agreed to be intubated. I explained exactly what that meant in great detail, making sure he understood that once they put the tube in they would not be taking it out without legal documents being signed. Kevin said "YES, I understand". So, they sedated Kevin with Propofal (more on that later) and intubated him. The CT was clear and he had no clots in his lungs, which led us to the diagnosis of respiratory failure. Oh Boy!
     I called the family, contacted the Red Cross and began bringing in our family, just in case this really was the end. Luckily, we have a great Neurologist and he came in and sat with me and talked about what this diagnosis really meant. In fact, he knew that since Kevin agreed to be intubated, our 5 Wishes plan went out the window, becoming irrelevant. He said that Kevin has plenty life left in him, and he was sure Kevin would opt to be ventilated, but to be sure, we were going to wake him up and let him make this decision. Once the family had gathered and everyone was at the hospital, the doctor took him off the magic juice and woke him up. Of course, this included Kevin fighting the intubation and trying to remove it. The doctor calmed him down and started telling him what was going on. He asked Kevin the ultimate question "Do you want to be ventilated or not?" Kevin obviously agreed to have the tracheostomy done and the ventilator has become the newest member of our family.
     Kevin - Once we determined surgery was imminent it just made sense to also have the peg tube (feeding tube) and suprapubic catheter done at the same time. On January 30th, the surgeries were completed and I left the hospital for a stay in a Long Term Acute Care Facility (LTAC).