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).