The doctor increased the amount of times Owen can receive the bolus of morphine. It's not that
he needs it often throughout the day, but the way it was prior to the change, he could only get the bolus push twice an hour. Now, he is able to receive it every 15 minutes. Again, he does not need it that frequently, but he is in pain when we move him to change his clothes or diaper or position. We do give him the push before we move him, but now being able to give him another one afterwards is much more comforting for me because I know that that will make
him more comfortable!
He did not eat at all today, and only one small spoonful of yogurt yesterday. He did take a few small sips of water. He is markedly weaker, and is opening his eyes less frequently, and for shorter periods of time. His extremities have been cold, so he is under 3 blankets-his "mommy kiss blanket", which is the blanket exactly like the one I had when I was a child and bought one for each of the three boys. When I left the hospital to go to work in the morning, I would cover the blanket in "mommy kisses" so that when he missed me during the day, he would always have a kiss from me, and he could be wrapped in my kisses, as well. His brother, Anthony, gave him one of his blankets (Blue Silky-it was a blanket Seth had laid on when he was a baby, and Anthony took it over when he was born). Since he has been so cold, I also added a fleece blanket that was made for Owen by Matt's niece, Heather, last summer, thus earning the name "Heather blanket". So many people have given him a blanket for a gift, so I imagine he will be using all of them from here on out since his circulation is starting to decrease. One of Frank's friends just made him a Power Rangers blanket, which will keep him very warm.
Tonight, while watching television for a short bit, I saw a commercial for tires that had the song on that Owen and I used to sing to each other..."Never gonna let you go, I'm gonna hold you in my arms forever..." I imagine there will be things quite literally every day that will remind me of him when he is no longer able physically here.
The day of Owen's surgery, I went upstairs to his room on the 9th floor to move all of our things to the PICU where we would be staying after the surgery. While I was up there, one of the nurses came up to me and handed me a penny. She said, "When we moved Owen's bed to clean in the room, we found this under his bed, heads up. We thought you should have it." I thought that was awesome of her to do. I took the penny, put it in my pocket, and didn't give it any thought until a few days later. There is an organization at Women and Children's Hospital called Stone's Buddies. They ensure that children and parents have people to talk with, and plan events where families are able to meet and form friendships. The group was named after a little boy named Stone, who was 4 when he passed away from a brain tumor. I received information about Stone's Buddies, and while reading it, my jaw dropped. One of the things Stone always had in his hand was pennies-he collected them. This is the story from the Stone's Buddies site:
According to Stone’s mom, Stone is forever sending tiny reminders that he is watching over her by dropping pennies from Heaven where she can find them.
From the earliest days of his diagnosis with a brain tumor, Stone’s tiny hand was often seen wrapped tightly around a fistful of pennies. He loved coins and collected them faithfully every day, depositing each coin in his piggy bank for the rainy day he somehow knew would come in the future.
When Stone left this Earth at the age of four, Stone’s mom
believes that – somehow – he took his special treasure with him. Every time she finds a precious penny, she knows it’s a priceless reminder of the love she shared with
Stone and his assurance that she will never be alone.
I got chills after reading that, and that one small penny the nurse gave me took on a whole new meaning. I spoke with Stone's mom, because I wanted to share that story with her. She told me that when she finds a penny heads up, she feels it is Stone saying "I love you." When she finds one tails up, it means "I am thinking about you." I never leave a penny on the ground now. Even the littlest things can have their meanings changed so significantly during a journey like this. Everything becomes so beautiful. Even a cold, rainy day (even the 11th one in a row!) can be captivating. There is purpose, there is beauty in every single day, even the dark and dreary ones that we think will never end. Think of all of the horrible things that would happen if there was no rain...there would be no puddles to splash in, the flowers and trees and plants would not grow, oceans would evaporate, there would be no rainbows...A life without rain would mean we would lose our appreciation for the days filled with sun.
