Thursday, April 28, 2011

11 days x 24 hours in a day = 264 hours

That's right. Do the math. 11 days x 24 hours in a day  = 264 hours.

Why am I pointing this out to you?

Yesterday we went for the usual VAD clinic visit, had other dr appointments, got our Starbucks for the ride home, and we made one more stop. We went to request Kevin's medical records for the 11 days of his life that he lost, has no recollection of. 11 days that I would preferably like to forget.

I understand 100% why he wants to read the medical records. Who am I kidding? I would want to read them too.

Doctors, nurses, family, friends, and even I have been telling Kevin about those 11 days. The journal I kept only tells him the medical part of his situation that I was told. I mean I'm sure they(doctors) didn't keep anything from me. Nonetheless it'll be interesting to read the actual doctor's notes. Nurses reports. The OR reports from the two open heart surgeries he had. How many blood transfusions he needed (I lost count after 40). His vital signs. His creatinine levels (this indicates kidney function). All the times they turned his sedation levels down and he didn't respond. The times he did respond. The fevers.

I know a few things that won't be in those medical records. How long I stood next to his bed each day. There wasn't a chair in his room until after the LVAD was implanted. I'm guessing too much equipment in the room to keep him alive. The fact that I was only allowed to touch his right forefinger through gloves for 11 days because there were so many IV's and apparatus hooked up to him. The endless consent forms I had to sign so the doctors could do their job in saving his life.  How many family members & friends that walked into his room and right back out again because it was THAT difficult. The family members who upon hearing about Kevin's heart failure were actually wondering where he would be buried. Not buried,we're a "green" family. You figure it out. The same family members that wondered if I would continue living in California with the boys. ummm, YES. The same family members that asked me for days to get a priest bedside to give Kevin his last rights. HA! The person that initially brought this to my attention got hung up on, by me, TWICE. My atheist husband and a priest? Sounds like a bad joke to me. But after days of pressure from a few people, it was late in the evening, Kevin was in bad shape, it was the night before LVAD implantation, and I was broken. Not functioning. I caved. BIG time. I asked for a priest. The most morbid experience of my entire life. Ask my inlaws, brother, and his sister. We were all there. My brother, his father, and sister couldn't even stay for the entire thing because it was too emotional. On some level I think Kevin knew what was going on because his blood pressure got higher. Well, never again.

So that's my side of it... the side that I'd like to forget.

There is another reason why he wants to read them. There is a missing piece to the puzzle. It's the piece that back in October, being his wife, I chose not to alert the masses about. His left arm/hand. The night he was bleeding out of control, had to go back in for another open heart surgery... the complications surrounding his left arm/hand. This is his missing piece. The doctors have explained why, the how, the reason for the loss of function in his left hand. Compartment syndrome. BUT, I assume reading it in black & white might put it to rest so to speak. The actual "timing" of it all, how it went down, what the doctors wrote in the OR report. He's a composer. Music is his life. He breathes, sleeps, & eats music. A prior blog entry I wrote "in order for him to get his "life" back, he needs to get his "life" back." I was referring to music and his heart. I knew back in October about the possibility of Kevin losing function in his left hand. "I" chose not to alert the masses because honestly, it was the least of our worries at THAT particular moment. I had no idea what the future held. I didn't need people asking me questions about his left arm when I couldn't even answer their questions about whether or not he was going to make it through the night. Following me?

There is always hope.

Where there is a will there is a way.

Well guess what people......we have hope. We have will. And there is a WAY.


  1. I hope you both find what you need in those documents—although, after having worked for an insurance company, I can say that they're usually so dry and clinical that it's hard to remember they're referring about a person. And having read some of my own, that's true even when the person they're referring to is yourself.

  2. Joe asked for a cd/dvd of all of his tests, surgery, etc. Interesting watching for him - I'm concerned about the outside part - Funny, I can take care of him or others till the cows come home - but guess I don't want to see the making of the situation....