So after the first few days of shock, sleep deprivation, and gradual acceptance of the circumstances we were in….
…. my New Life and New Job began on Floor 5, Pediatric ICU, Cincinnati Children’s Hospital.
I knew I had to get over myself. At some point, we have to pick ourselves up, dust ourselves off, take stock of the situation, and get to work, don’t we….
I slept, kind of, finally. There was only one chair that pulled out into a “bed” in that room. Cory’s Dad and I took turns sleeping in a chair stooped over Cory’s bed onto a pillow or in the pull out bed. We played the Parent Sleep Room Lottery every day (a separate sleeping room for one, no windows….there were only a few for the whole floor). But because the unit was fair to all the parents on the floor, we “won” every three/four days or so. Then both Charlie and I would get a bed for the night. It was nice to be in the pitch dark on a real bed, but it felt too far from Cory and I slept with one ear open in case my phone might ring from the room down the hall. Most nurses did a fantastic and considerate job of using flashlights to work at night in Cory’s room, so I preferred to just sleep in his room.
We had a routine in the morning… taking turns leaving to get coffee, eat, shower, dress, taking care of phone calls for work, business, our families at home…ready to face what each day might bring.
During the day, I started my PCA (Nurses Aide) training (not really, but felt that way). In these first weeks, we had different nurses every day and every shift. I learned to understand how critical Cory’s situation was by the number of nurses assigned to him. In the first week, there were 2 nurses whose only job was Cory every day and every shift. They worked the whole time.I mostly didn’t know what they were doing, but I asked enough questions to probably be annoying, and I asked where and how we could help…..and they told us and they taught us. Turns out many loving hands were needed for the simplest acts of care. ❤
The first order at hand was his blistered back…..we were assigned a skin-care-specialist Nurse at first who taught us how to turn him, carefully pull off his non-stick bandages, “clean” the skin, prepare the next bandage with a cream and netting that kept it from sticking to his blisters and open wounds, and how to keep everything sterile in the process (blue gloves were my newest accessory)….the “bandages” covered his whole back. He was being treated with the same protocol as a burn victim, and even though he was sedated, he would wince with pain when he was turned and when the bandages were changed.
Every new nurse would bring new knowledge, or something they’d picked up in their experience that collectively helped Cory and his comfort or safety. For example, because Cory was on his back, the bandages would often bunch up or fall off his back. An “old school” nurse was assigned to him who sat herself down and hand-sewed a vest out of a gauze material to keep his bandages on, another nurse knew a trick for turning him that made it much less painful for him, another was a Pillow Queen that staved away bed sores, and another came in on his day off to cut a bandage for Cory’s pic- line that he designed especially for Cory to keep germs out that no one else knew exactly how to do….the list goes on. and on. and on. These may sound like not big things, but to Cory, immobile and in pain and should have been the “Boy in the Plastic Bubble”, they were invaluable contributions. These were just loving gestures of time and teaching offered because they cared. This was Over and Above the 100 other juggling acts they were managing that stemmed from their years of education…medication and lines and charting and sterility and numbers and math and science and executing directives of putting square pegs into round holes.
We learned where to get our own ice water, our own bed sheets and towels, our own scrubs if we needed them, ect. We tried hard not to expect the nurses or aides to “wait” on us on top of their already over-burdened To-Do lists. But they would have if we asked.
Our He-roes and She-roes.
I paid attention to every instruction. When new nurses would come in, I felt awkward at first correcting the way they might be doing something for Cory, but they were so gracious…knowing we had already had witnessed and done it many times. Eventually, the nurses passing the shift baton would say, “Ask the parents if you have any questions.” or they would tell the incoming nurse that we would do certain jobs ourselves and the nurse could assist. Eventually, the awkward went away, because we were a Team. Charlie and I were the “constant” in Cory’s care because we were there all the time, and we were his advocates because he couldn’t speak for himself. They were the Pros. We were all learning from each other on Cory’s behalf, and the tasks were aplenty. I took my new job very seriously and I learned more in two months than I could ever blog about in years. Not just medical jargon or protocol, but about People and Hearts and Life.
The nurses, the staff, the doctors, the parents, the family, the friends—the first Team Cory.
(About those blisters—the Infectious Disease Doctors decided it was GVHD.)
Campath was sent in to suppress his immune system so it would stop attacking his skin….It all sounded so backwards. Trying to build his immune system, but having to suppress it…but not too much.
This on top of his Respiratory System, his Urinary System, and His Digestive System being aided by Gizmos and Gadgets going in and coming out of every orifice.
At this point, I still had NO DOUBT that he would make it. I adopted Cory’s mindset—I just focused on each hurdle (no matter how colossal it might be) as a bump in the road on his way back to Living Life.)
“Hoping for flatter ground and some sunshine tomorrow. I miss the sun. I’m tired of these clouds and the wet. Fingers crossed!!”–Cory Jay Powell, Day 33 of his cross-country bicycle journey.