The last several days have been a blur. My phone and Facebook have being blowing up with messages and I still need to read or reread many of them. I couldn’t gather my thoughts enough to write from my phone. I needed a keyboard, but haven’t had the time to sit. I haven’t had the time to process. I don’t even know what I feel right now besides empty. For 25 years my focus for Ray has been recovery, get through this, get better, get home where it’ll be restorative.
Giving up control is hard. Realizing that in small ways he’s been making this decision for a long time is hard. Realizing I can’t make it all better any more is hard.
The basic “what happened?” part of the story is more simple than the whole tumbling downfall of the last 3 years. This piece of the story started on February 4th. Ray’s aide came, but all he wanted to do was sleep. In and of itself, that wasn’t unusual. He had a tendency to stay up most of the night texting and chatting with a variety of people online.
That’s when he’d often post numerous cooking recipes. So incongruous, the kid who didn’t eat, who didn’t know what most food even tasted like, binge watched cooking competitions and posted recipes to Facebook. But, that was Ray. So when he wanted to sleep that morning we let him. He seemed quite content.
His nurse came that afternoon and one of the first things she did was check his heartrate and oxygen saturations. Oxygen was fine but his heart rate was in the 140’s; much too high for someone sleeping. I knew immediately that this meant he had a temperature. She checked it and it was 101.8. After a quick call to his doctor, she called for an ambulance transport to take him to the hospital. Like most individuals with an implanted IV port, a temp of 101 means a trip to the ER for cultures and bloodwork.
This admission was relatively anti-climactic. Nothing grew from cultures. They started IV antibiotics before he even left the ER and his temperature broke before he had a room assigned. For the next 3 ½ days they ran a gamut of antibiotics and lots of IgG. He was pissed off about the IV they put in his arm and even more pissed when it blew. The fever didn’t return and on that Friday, the 8th he was discharged home.
First thing Wednesday morning it was obvious his breathing wasn’t right. It was labored and his chest was retracting with each breath. His hands were cold, so I’m not sure the pulse ox I used was right, but mine said 70%. 70%! Oh shit! I called 911 again to have him transported. Their pulse ox read in the 80’s, but that was still too low and his heart rate was back up as well although no fever this time.
This trip to the ER ended up with him sent to a room in the ICU. I never got to see the chest x-rays from this admission, but Ray’s primary doc, who came to the hospital for him, later told me his lungs were significantly worse, basically white. His lungs were full of fluid.
The usual attack against an unknown infection began with cultures that didn’t give us answers. Then it was on to antibiotics, antivirals, antifungals and IgG. The big difference this time was that Ray didn’t want extra IV’s. He didn’t want the high flow cannula. He didn’t want anything that was going to hurt. He flat out said “NO!”. Through Thursday he was on his phone, he was posting on Facebook, still posting recipes and cooking videos. I was bringing him his iPad on Friday morning.
But Friday didn’t go so well. It was like he was running a marathon while lying in bed. He was tired and didn’t want to hurt any more. Some of his friends came by that day. He was able to acknowledge some of them. With medications to make him more comfortable he became less anxious and finally slept. At one point I heard him say something and pulled the oxygen mask away from his face for a moment to find out what he wanted. His was response was “I want to be normal”.
I was always so focused on recovery every time he ended up in the hospital. For years, heck a couple of decades, that worked. He’d get better. He’d get back to doing the things he loved to do. Looking back the last 3+ years were a slow decline. On August 30th 2015 Ray was admitted with a fever. That admission ended up with him in PICU, on a ventilator. Afterwards he got better; he came home, but he never fully bounced back with the same physical strength he had had before that admission.
Despite repeated attempts with physical therapy, he just wasn’t gaining back the same level of strength. Every admission since 2015 resulted in a stair stepping down in strength and general health. In November 2017 when we lost his dad, he was once again in the hospital. This time with compression fractures in his spine. His physical strength and ability continued to decline. Throughout it all I kept trying to adapt and compensate for everything to keep him moving forward, progressing, and recovering. He just couldn’t do it.
He had friends who would come and see him or take him out to movies or to a variety of events. He loved doing that! He has had amazing friends over the years; friends who’ve been there for him for years, friends who didn’t forget about him. Admittedly, it’s hard to forget Ray. With a glint in his eye and an infectious laugh he was always ready for a good time, a party, or a dance. He loved fast cars, music, pretty girls, the Caps, the Patriots, the Nats, shooting sports, helping people, giving advice, and he loved being the center of attention whenever he could. He had a whole series of friends online as well as a following for his recipe posts to Facebook.
He gave people hope. He inspired them with his resiliency and strength. My warrior, my hero, is finally where he can be normal and dance again.
“A true hero isn’t measured by the size of his strength, but by the strength of his heart.” — Zeus