My brother was diagnosed with Multiple Sclerosis when he was 15. Last week he passed away at the age of 32.
He has been sick for a long time. It has been a rough journey for that sweet boy.
For 3 weeks he was progressively getting sicker. Having trouble swallowing and losing the ability to cough. He kept getting pneumonia. He was intubated and then it was removed only to have to put it back again.
He kept telling us – spelling it on a sheet or miming – that he wanted it out. That he wanted to go home.
We wanted that too, but the doctors at St. Anthony wanted to make sure he understood the consequences of removing him from the ventilator. That we may not be able to make it home. They said repeatedly he could pass in transit.
But it is what he wanted.
We were working with a fabulous hospice in Oklahoma City called Oklahoma Hospice who were truly working for his final wishes.
Thursday morning April 13th the doctors talked to him one more time, he made it clear that he understood he was going home and he wouldn’t survive.
We had amazing doctors and nurses. Specifically our nurse Sam. She was with us Tuesday as well. She even changed the overnight schedule to make sure she was in control of his care. Dr. Jarod was also incredible. He understood the difference between quality and quantity of life for Chris and was tremendous in helping make sure he could get home.
Once Chris made his final decision and everyone was on board, things moved quickly.
They removed the tube.
There was a chance he would have swelling and we would only have minutes, but true to Chris fashion…he was fine. One of my best friends delivered some candy to the hospital and we were able to help keep him calm by giving him some slowly.
As my parents, one on each side of his bed sat with him and talked. I hurried around trying to sign papers and make all the arrangements to get him home as quickly as I could.
Paula, Chandee and Rory ran to mom’s house to organize and receive hospice materials.
We needed transportation and oxygen to get him home. Mom bought a wheelchair van and it was at the house. So a quick call to Corymiller and he was on his way. There was an older wheelchair in her garage and on a whim asked him to grab it.
Next, was the oxygen. Hospice, working diligently could get it there in 30 minutes. Then Sam disappeared. I went looking for her to tell her we could go in 30 minutes. That Dr. Jarod signed the releases for self-transport and oxygen would be there.
I see her at the end of the ICU hall surrounded by several other nurses. I walked up and she turned around with this tank in her hand.
She said: “I stole this from a crash cart. Promise you will bring it back? LETS GO!”
They were busy getting him hooked to the new things and I get a call from Corymiller:
“Look out the window, I can’t get to the door with the van”
Panicked I hollered at Sam. She says, go to the ER!
I run down the stairs instead of waiting for the elevator to go the 4 flights and run through the ER to get the wheelchair–thankfully we thought of that!
I go back up just in time for the nurses to get him into the chair.
That’s when we realize why mom kept saying something was wrong with it. There were no foot peddles!
So, we start running out of the ICU.
I was holding his right leg, Sam had his left leg, mom was carrying the folio bag, another nurse was pushing him and another had the oxygen tank.
We literally ran down hallways. We weren’t sure when we would lose him and we wanted to get home.
Cory was waiting by the van with the ramps down and we got him in there.
You wouldn’t have known he was sick. His smile was HUGE. He was laughing–even though he still couldn’t talk.
Mom and I got on the floor on both sides of him and Corymiller drove that van like he was Mario Andretti. We got stopped at a red light trying to turn left and Chris started pointing. Cory said, “want me to run it”
A big smiling YES!
So he did. Grandma Mo was following us, she definitely thought about running it and changed her mind.
We pass a liquor store and Cory asked Chris if he wanted us to rob it.
A big smiling YES!
Then, a where is Mo? And suddenly she zooms out of the liquor store parking lot!!
We laughed so hard that Chris choked up and we thought that was the end.
So I declared, no more jokes until we got home.
We pull up and there are so many people waiting for Chris.
There was some difficulty getting the van to work. Mainly because there were 3 panicked people all pushing buttons at the same time. I think if we stopped for a second and took a breath we could have figured it out, but it was the great escape and we couldn’t breathe until we got him home.
Once inside, the boy the doctors said would live minutes to hours was happy, joking, sitting up in his wheelchair watching TV surrounded by family and friends.
The hospice nurse arrived, also in a panic expecting someone on death’s door. And when she left she said she would come by 3 days a week to check in on us.
He ate smoothies, ice cream and strawberry cheesecake.
Triniti came for a visit and got to give him some presents.
He was in his favorite OU ball cap that CJ went to retrieve from Chickasha that morning.
My uncles mounted his TV on the wall and Corymiller got him an Apple TV.
We also started receiving deliveries of his favorite green products and helped administer those.
He was happy. He was more than happy he was at peace.
I put Franchesca on his lap and he loved it. She would lick his face and he would just lean into her. Gotta love those therapy dogs.
This isn’t the story of Chris’s end. This is the story of the escape and the beginning of the happiest 40 hours we could have hoped for.