My New Residence After Being Hospitalized for Months: Into The Cradle
I left the Traumatic Brain Injury Unit at Mount Sinai on the 27th of July, 2011. My mother pushed me in a wheel chair to the edge of the sidewalk and then I used the walker to brace myself enough to swing myself into the cab. I was still very weak and didn’t have much lung capacity so I couldn’t walk very far or fast, and was instructed to start with short walks (half the length of a block), using the walker and to build up endurance and strength from there.
My mother carried all of my hospital belongings that were left after taking almost everything from my hospital room to the apartment the previous night, which she had also set up with all the equipment that the medical supply company delivered.
The delivery came to the apartment 3 days before it was supposed to, before she had even moved in. It consisted of boxes and boxes of supplies: tracheostomy cleaning kits (2x/day), a humidifier, a Nebulizer (for lung treatments 2x/day), a toilet frame, a shower seat, a wheelchair, a pulse oxygen meter, blood pressure cuff, stethoscope, saline solution, distilled water, boxes of tubing, feeding syringes and 6 huge (5ft tall) oxygen tanks!
My mom was trying to keep a pretty “low profile” until it was time to move in, so when the doorman got my mom’s phone number from the delivery company and called her to ask her what this was about (they were used to seeing corporate guests come there, not a severely injured hospital patient). My mother was mortified because there was a corporate guest staying in the apartment that weekend and the delivery wasn’t supposed to happen until Monday, after he was gone.
The doorman was wonderfully understanding and hid it all in a storage room until she arrived on Monday afternoon and could start setting up the apartment with all of this equipment! They must have thought we were going to be running a hospital out of the apartment. Well, that was sort of true. We only had an agreement to use the apartment for a month, and would have to move out to a hotel if the corporation needed it for any of its guests.
The minute I met each one of the doormen, they befriended me and always looked out for me. They were extremely accommodating, running out in the rain with an umbrella when our cab came to the building, asking how I was feeling each day and helping in any way they could. They were all very compassionate and gracious, and applauded each new milestone I made. Thank you Aleks, Buhal, Luis, Luis Jr, and Henry. I will never forget you.
The apartment was breathtaking. The elevator opened up inside of the apartment and we could see the Chrysler Building from the kitchen window. There were only 16 units in the building an each one was its own entire floor of the building. There was even a washer and dryer in the apartment!!! That is VERY rare in NYC.
I was extremely lucky to be in such a safe, comfortable and friendly environment, I know. I’m lucky for a whole lot of reasons. I know and I am so thankful every day.
It was the closest thing to having a home that either of us had since May 8th. My mom had been winging it; sometimes day to day or week to week for where she would stay next. She did a mixture of couch surfing with friends of mine, staying in hotels, and boarding houses.
Having a sense of home (if even for a month), I could still have my friends visit me at the apartment to play card games. When friends came to visit, I would text them that they should tell the doorman that they were here to see me and he’d walk them to the elevator and swipe the card that sent them to our floor. “What apartment?” they’d ask and I’d ask” just go to the 11th floor and text me if you’re lost.” Then a friend would get out of the elevator and say “hello” in a confused tone and be in the apartment. This was a huge change for me and my friends who lived in NY. Most of us lived in Brooklyn, and had never even been to a residence that had its own floor. It was nice. Thank you so much to all of my friends for being there, it means so much.
I was still in pretty rough shape, and most certainly would have been in a nursing home if it weren’t for Anna, Kim Girard, and John Paget. Thank you all so much! I don’t know what would have happened if my mom hadn’t found us a place to live, taken the responsibility and convinced the social worker at Mt. Sinai that she would be able to provide the same (if not better… It was WAY better) care than I would have at a nursing home (for the elderly!!!). I was kinda bummed that I wasn’t gonna make some short lived friendships… Bad joke? Yeah, bad joke.
One day, my friend, Jane, came to visit. She is kind of a jack of many trades, and photography was one of those trades. When she saw me with my eyepatch and a tracheotomy, she asked me if she could come back with a camera to take some stills. I agreed and a few days later, she returned with a bag full of camera equipment, ready to shoot.
So here I was, in a plush corporate apartment on Park Avenue after spending months in the hospital, and I was modeling! It is pretty funny to think back on, but it was hardly fun. I could not talk, I breathed through a tube in my neck that made me sound like Darth Vadar, and I couldn’t eat or walk. Jane worked on getting the lighting right and took quite a few pictures. This is my favorite.
My mother had adapted the apartment to meet my handicaps. I had a frame on the toilet with handles, a seat in the bathtub/shower because I couldn’t stand on my own. I also had a walker and a wheelchair. I used the wheelchair almost always, at first. I slept on the side of the bed right by a bathroom (3 steps away from the toilet) to prevent me from having a late night accident (which I never did, thank God). There was a special humidified oxygen machine and my mom would hook it up with a long corrugated tube to the breathing mask that I always wore to cover my tracheostomy tube so I was protected from directly inhaling anything nasty that might have been in the air. At first, I used the machine every day and night, as they didn’t want my trachea to dry out. As I got stronger, I only used it at night. I also had nebulizer treatments twice a day, my tracheostomy tube had to be cleaned twice a day in peroxide and saline solution, and my peg tube had to be cleaned and dressed each day. I was a lot of work!!!
The New York Visiting Nurse Service sent a Visiting Nurse who came once a week, a social worker, a Physical Therapist named Peter Wu, an Occupational Therapist named Phil, a speech therapist named “Mel”, and an aide named Yuwell. Yuwell was about 19 years old and this was his summer job. He would help me shower and dress myself. He helped with everything except wiping my butt!
I taught him how to play gin rummy and he came for 4 hours 3 times a week. This would let my mom run errands or just take a nap sometimes. We became friends, and even though he had never taken care of someone with injuries
like mine, he learned fast and really cared about me. He still texts me every so often to see how I’m doing. Thanks Yuwell, and I hope things are going well.
When the Physical Therapist, Peter, came over to help me walk again I was excited. I couldn’t stand on my own. Because he was only going to be working with me for a few weeks before and after my surgery, he put in a special request to see me 3 times a week instead of the once a week that was scheduled. He was determined to make some major changes in the short time he saw me. He had me working hard, and that’s what I needed an knew that I needed. He had me doing exercises like squats and lunges in my weak state. I was able to slowly pull off a squat or two while holding onto the door frame. This was so difficult. I needed to rebuild the muscles in my whole body. I needed to regain some strength to at least stand on my own.
Peter was amazing. At this time neither my mother nor I had understood that I must have had a stroke. Peter, however, knew on some level and structured my treatment as if I was a stroke patient. He had me practice walking with my walker by dragging a piece of paper on the floor with my left foot and step with my right. I would practice walking in that fashion for at least a month. The reason for dragging the paper was because I would lift my left foot far too high unnecessarily when walking and this exercise was designed to get me to walk normally.
I later found out through reading my hospital records, reading medical literature and studies, and talking to my functional neurologist that the reason I did this was because damage was done to my cerebellum during the hypoxic stroke I suffered when they tried to extubate me (remove my breathing tube).
The cerebellum is the part of the brain that controls motor skills and balance. Damage to this area left me extremely uncoordinated on my left side. Especially my left arm and leg. So, at first, I would spend almost all of my time in the wheel chair, and use the walker to go to the bathroom… Which was quite frequent, I would also pee in the urinal bottle if I needed to… Which I often did.
While I still couldn’t eat or talk, and could only walk with a walker, I no longer was restricted to the mere 2,000 calories of Boost or Jevity that they kept me at in the hospital. I was able to have pureed foods. My mom would shop for really brain healthy foods, cook stews, puree them with a mini food processor (Magic Bullet), and use a large syringe to inject the food into my stomach tube. She even made and my grandma’s spaghetti and meatballs! She’d give me small amount in my mouth, and fill my belly through the tube. It was the closest thing to feeling the pleasure of eating that we could imitate… Almost like a mama bird feeding her baby. But not at all like that.
I can’t even express how amazing my mother was through all of this. One of my
first memories after the accident was my mother telling me “A lot is going to
change and be uncertain through this, but you will have at least one constant
that you can count on: I’ll will be by your side through all of it, and I will walk you through this, Cavin.”
I could have cried at those words. Having a constant kept me stable and sane during such an unstable period. There were so many unknowns.
Admittedly, at that time, I also had no idea how important food is for your brain and body to repair itself. Apparently the hospitals I received care from had no idea either, but my mom’s sister (Aunt Debbie) did.
My aunt Debbie is a nurse practitioner and has a practice based on evidence based nutritional medicine. She believes in the words of Hippocrates: “Let food be thy medicine and medicine be thy food.”
When I had the accident, she was devastated, but she went right into action, and flew out to New York on June 24th, the day after I had the tracheostomy, specifically to attend a conference on the brain and learning about the supplements that cutting edge research were showing to have significant effects on brain health. She was also very concerned about beefing up my immune system, which was pretty trashed from the injuries, and all the medications I had been put on in the hospital. Both of which had left me with a weakened immune system… A weakened everything really. She drew my blood and had lab tests run to see what foods caused an allergic reaction with me. She also brought some stuff to help my mom stay healthy. She’s a passionate, unselfish, amazing woman… she’s a healer. I love you, beautiful queen aunt Debbie!
Once my mom was able to feed me, Aunt Debbie gifted me many nutraceuticals (pharmaceutical grade nutritional supplements) and had them delivered to the apartment, so I was having high power nutritional shakes and taking in a lot of different supplements crushed up into my food that was injected into my stomach. With as little as I knew at the time, as far as I was concerned, it couldn’t hurt, and I was willing to do anything to get better.
Brain plasticity or the brain’s ability to repair itself has only been recently accepted by mainstream medicine. It is pretty much proven through the patient’s ability to create new pathways that bypass the ones that were destroyed.
Knowing what I know now, I wish I also had her pumping kale, chia seeds, and other “super foods” into me along with plenty of animal fats for brain health. I couldn’t taste anything anyway. But what she was feeding me was a hundred thousand times better than Boost, and I was no longer calorie restricted! My health started to improve dramatically. I had lost 35 pounds in the hospital and had very little muscle mass. Now we could finally give my brain and body the fuel it needed to repair itself. Finally!