Tears fell this morning as I cared for Amos and I began to develop a deeper appreciation for caretakers.
I helped him bathe and realized how thin he had become. The muscle mass in his arms and shoulders has turned to bones with a clear skeletal figure protruding everywhere except his misconfigured sides and distended abdomen. His thick wrestler’s neck has disappeared, but his facial structure again resembles the boyish looking man I married 20 years ago.
I did the best I could to get him clean while trying to avoid all the wires and ports. He would scream out at the slightest accidental touch near his stomach and the movement of washing his hair made him nauseous.
I helped him out of the bathtub and he immediately began to vomit. He hates it because the clenching of stomach muscles causes intense pain. We cleaned up again then I traced and cut out a new ostomy attachment.
I got my sweetheart back to his bed where he has been all day blowing up like a balloon.
Connie made him some homemade chicken noodle soup then she and dad took the kids out for dinner while I am here learning how to run his TPN.
Being trained in these medical procedures takes me back 25 years to when I was just a teenager being trained to care for my niece, Jesse, who had spina-bifida. I would do different things to care for her like run the long suction tube down through her tracheotomy to clear her airway.
Sweet Margene from Aegis taught me to hook up and run the TPN machine tonight for feeding Amos through his blood stream. I have to use needles to add the liquid vitamins into the bag then hook up, prime, flush and run the food through a machine connected to his port for 18 hours at a time. I then have to check for hypoglycemia after it runs to make sure his body doesn’t shut down when we take the constant stream of calories away.
We got a call from Dr Willyerd at his work who sent encouragement for Amos from the rest of the psychology staff at the prison. They have been missing him.
We got a homemade blanket from an Evie Clair fan who wanted to do something for Team Amos. He started an organization called Joey’s Blankets and I thought it was so sweet for him to reach out to make sure Amos got one.
The baseballs on the blanket reminded me that the Diamondbacks offered another group discount for Team Amos and Evie Clair fans. You can grab those discounted baseball tickets here. Go Diamondbacks!!
I am really thankful for this time in my life that I have to become a caretaker again. It gives me the opportunity to grow in compassion and patience among other attributes. The last time I really felt like a caretaker was when our foreign exchange student with Down’s syndrome was here. Yuta and his mom still support and love us so much. We just recently got a package from them all the way from Japan filled with a beautiful music box, notes and crafts from Yuta and some of our favorite treats. We love and miss you Mieko and Yuta.