TBI Talk –
By Richard Radecki, Sr. (Grandpa)
I asked my grandson, Ryan, if I could write some articles for his website, my thoughts being the many hours, days, and months I spent with Ryan during his hospitalization and aftercare. I feel my observations, experiences, and overall education could not only aid in helping the TBI sufferer, but family and loved ones as well.
First, what I hope Ryan and his website accomplish: I remember one statement I heard from many sources. “Most of the gains regarding brain function will happen in the first year to year-and-a-half. After that, progress is slow.” This statement turned out to be pretty accurate.
So what do you do when progress slows down, and you want to get more of your life back, be more self-sufficient?
I would like to start my answer by telling a story of (I feel) great success about the blind. I was walking with my wife in front of Lincoln Center NYC, where Broadway, Columbus Avenue, and W. 65th St intersect. We watched as a blind man, with a cane, crossed multiple streets, first from west to east, and then north, then entered a subway station, going down the stairs by himself. But when I thought about it, I realized that he was actually NOT unassisted.
Someone invented the walking cane for blind people. Then instructors trained them in the use of the cane. Over time, sidewalks, traffic lights, buildings, stairways, subway stations, and intersections were specially designed to accommodate the blind person’s disability. Although you cannot give them back their sight, you can make effective use of their other abilities to help them function independently.
By the same token, you can’t repair the damaged parts of the brain from TBI, but you can invent other ways to accomplish everyday tasks. It is tedious and slow trying to do it by yourself. So wouldn’t it be nice to have a website to visit, where you can share ideas, problem-solve, hear success stories, and most of all give a voice to the tens of thousands of TBI sufferers and their families?
In the future you will be hearing from people who have TBI and have used the skills they have to create careers and positive additions to their lives.
As I wrote earlier, I will write articles on how we got through it with Ryan, and what kinds of things gave us the most positive results.
Let’s break through that 1½ year wall!
Article #2: When You Get That Call
Nov. 12, 2017
My wife and I were in our New Jersey home when I got the call from my son, Richard, about Ryan’s accident. It didn’t look good for Ryan. The doctors were preparing his parents for the worst.
I just wanted to know if Ryan had any vital signs. They were extremely weak, and it didn’t look good…but he had vital signs. I said, “We’re on our way.” The hospital was nearly 2 hours away, so I asked my wife, Chris, to drive. I didn’t know how I could possibly handle driving, and she felt able to do it.
This turned out to be a good decision as I was able to really focus during the drive. Ryan had vital signs. He was strong and healthy. He played soccer and he was on the high school wrestling team. That was the thread I was looking for. I prayed that he would make it through the night. Every hour he survived, I felt his chances would improve.
When we got to the hospital, the waiting room was packed and filled with energy. Family and loved ones. Ryan’s best friend’s mother drove her son to be there. Ryan’s parents’ friends, even one of Richard’s customers drove a long way to be there. Friends and family all across the country were starting prayer groups for Ryan. The love and positive vibes flowing through that room lifted everyone’s spirits, and any negativity just faded away. It allowed everyone who would be involved with Ryan to stay focused, and to just move forward.
Unbeknownst to us until later, that night set up the solid foundation for the long journey ahead of us, and the challenges to come.
Ryan survived the night. He had a traumatic brain injury and was still not responding to any stimulation. His vitals were still very weak. The doctors still gave him little chance of survival, and an even slimmer chance of recovery. Only Richard, Karen (Ryan’s mother) and Lauren (Ryan’s sister) were permitted to be with Ryan and the doctors. So they all spent the next several days at Ryan’s bedside.
It was then decided that someone from the family would be with Ryan day and night. We formed a team to support Ryan every minute in his fight for survival Since I was retired, I was able to take the day shift during the week. As a family we filled up every possible hour, watching and caring for Ryan. He was never – not even once – in his room alone.
And this is something I strongly suggest: We kept a notebook to record anything we were told by the doctors, nurses, therapists. We also included anything that was done in these sessions, and any observations we made of Ryan during the time we were with him. We found that these notes were invaluable in terms of keeping track of what was happening at all times, so that every member of the team was on top of any new developments.
There would be no failure in communication.
And although Ryan was in a coma, he continued to survive.
Those first days with Ryan moved along from minute to minute. A ten-hour day was like 600 individual minutes. They were so important, and I don’t want to rush through them, so I will put them in the next article. But this is another strong point I want to make. Many thoughts go through your head in 600 minutes. The way I was able to stay focused and positive was through my communication with God. I would run all my thoughts by God and ask for guidance. It always worked!
Signed: GP (Grandpa)
Grandpa’s Corner #3: THE FIRST DAYS
As I am writing these articles, I have an opportunity to go back and review how Ryan’s care and healing success evolved from actions we took during those first days.
Here are some of the important things we learned. So, when you get the call, and you are the parents, guardians, spouse, person or persons who will make the decisions…
- TAKE ACTION. Get to where you have to go, meanwhile contacting the people in your support group that will get things moving.
- TRY TO HAVE SOMEONE WITH YOU WHENEVER YOU MEET WITH THE DOCTORS. That way, one will talk while the other listens. This will allow you to ask the right questions and go over it with your partner afterward, so you have all the facts and choices clear in your mind. Ask for God’s guidance that you will make good choices and decisions.
- CREATE A SUPPORT GROUP: Have people you love, trust and respect. NO negative people, or anyone who will take energy away from the group (people who might need consoling or extra attention), The group is there to support the people making the decisions (parents, spouse, etc)
- CREATE A POSITIVE ATMOSPHERE, CALM AND RESOLVED. When I think back to that first night with Ryan, walking into that waiting room…it could not have been a more positive, uplifting mood; one that Ryan’s parents and sister must surely have felt. After all, we couldn’t do anything for Ryan (except to pray) or make any of the critical decisions. We were there for the people who COULD make those decisions.
I keep mentioning the positive energy in the waiting room, and I want to explain. It was not loud or boisterous, phony or “Can-Do Ra Ra” at all. But there were no long faces, everyone was engaged in normal, meaningful conversation. There were no tears, just love and positive energy. An understanding that this was another challenge to be faced in life.
- PRAY. It works. It will guide you along the journey, keep you on the right path. Ryan must have felt our prayers and love, because he chose to come back.
- BE POSITIVE. I use this word a lot, and I want to be clear about what I mean. It means moving forward, making good clear choices based on the facts and your own personal moral compass. You are never choosing what YOU want, but what is best for the people involved (most importantly, the ones who have to make the hard decisions). Once again, asking God’s advice helps.
- 24/7 FAMILY ATTENDANCE. As I wrote in the last article, a family member was with Ryan at all times. The first thing it accomplished was showing the doctors, nurses, therapists, and supervisors how important it was to us that Ryan got the best care possible (not by intimidation but instead by how much we obviously cared for him). That always encouraged Ryan’s professional caregivers to be at their very best with us, and to take the time to explain to us what they were doing, and why. Some family member was present for every examination and treatment, and could therefore be educated by asking questions for clarification of what had to be done.
We were there also to attend to Ryan. Even though he was in a coma, he was often very agitated, and was constantly trying to pull his tubes out (including all night long). It required constant vigilance! The hospital staff could never have had that level of attention. As time went on, we were able to do more and more for Ryan, to keep him clean and safe. (Since the nurses and therapists spent the most time with Ryan and others with similar conditions, they could give us very helpful advice based on their experience.)
- THE LOG BOOK. All the information from the examinations, doctor conferences, observations, progress (tiny steps forward) were recorded in he log book for all responsible parties to see. All that information (for example, the temperature of his shower – as he was very sensitive to the hot water) got passed along to everyone who tended to Ryan, including doctors, supervisors, nurses, aides, and all his family caregivers. It was incredibly helpful and important.
Critical Decisions, Critical Times
As I mentioned in earlier articles, the first week Ryan was in the Trauma Center at North Shore University Hospital, only his mother (Karen), his father (Rich) and his sister (Lauren) were allowed in the room with the doctors and staff. You could not find better people to be making the critical decisions, not only to save Ryan’s life, but to help determine what kind of life Ryan would have in the future. They were able to clear their minds so that they could take in all the information and options, and make the decisions Ryan’s doctors needed in order to proceed. Ryan’s parents were given percentages of success, best- and worst-case scenarios, and were constantly updated so they could make quick and intelligent choices.
The first thing doctors had to do was stabilize Ryan’s brain and body. Procedures were done to relieve pressure on the brain, medications were adjusted to control his vital functions, a breathing tube, feeding tube, waste evacuation tubes and IVS were administered. Monitors for blood pressure, heart rate, breaths-per-minute oxygen, and temperature had to be watched constantly. The slightest adjustments could cause pressure on Ryan’s brain.
It took several days to achieve any kind of stability and balance to the brain. It was still touch-and-go, but doctors had to start repairing Ryan’s broken body. His femur (thigh bone) was shattered, and a metal plate (from his hip to his knee) with screws had to be surgically installed on the bone of his left leg. It was not possible to do the surgery on an operating table like they normally would, since laying down would severely increase the pressure on Ryan’s brain. Instead, they had to perform the operation in an almost standing position. The surgeon did not have the time or the ability (under those difficult circumstances) to set the leg perfectly. It took three more surgeries to accomplish that.
Nurses would regularly have to suction the fluid out of Ryan’s lungs and x-rays were taken daily to make sure he wasn’t developing pneumonia.
Ryan needed additional surgeries, but after the surgery on his leg, he developed an infection that was difficult to get under control. (Almost 2 years later, when he went in to have his leg corrected, the infection was discovered hidden under the metal plate.)
So at the end of the first week, Ryan was in a coma, running a temperature, and everything was still touch-and go.
At Blythedale we soon adjusted to the new routine. While at North Shore it was all about quiet and healing, at Blythedale it was all about work!
We needed to get Ryan washed and changed and ready for every day. Doctors and staff would show up early each morning. They would examine Ryan head-to-toe, and order whatever tests were needed. Then they would review previous test results and feedback from therapists, adjust medications and therapies as needed, and set up the next plan of action. Meanwhile, we had to coordinate a schedule with Ryan’s four therapists (two physical, occupational, and speech) on days and times for his treatment, and have him ready when they came. Blythedale also had a program for young doctors in which they would spend six weeks at different hospitals as part of their training. The first doctor spent the first four weeks with Ryan before he was transferred to his next assignment. I don’t remember his name, but he was a really nice guy, very easy to talk to. He would come in usually sometime in the morning and examine Ryan, then try to get Ryan to respond to different kinds of stimuli. He had access to all of Ryan’s medical charts, so he was always aware of Ryan’s state.
Every doctor visit, therapy session and observation, and their results were entered into the log. The first thing we would do, as our shift began, was to read the latest in the Log book. The first two-to-three weeks at Blythedale, Ryan was still non-responsive. His eyes would just stare into space. He did not react to any stimuli. But we did not get discouraged. Karen and Rich formed a great team of family, doctors, nurses, and therapists all working toward one goal. The Log book was the glue that held this all together. We were always working on something.
The First Signs of Life
During breaks after Ryan rested, even though he showed no signs of response, he would sleep after the sessions. I would stand by Ryan’s bed and talk to him, and try some of what the doctors and therapists would do, just one-on-one. When I would talk to him, I would tell Ryan what had happened to him, and what everyone was doing to make him better. But he would just lie there staring into space.
Then one day I saw his eyes meet my eyes. So I kept talking, and held his gaze for maybe a minute before he drifted off again. I couldn’t wait to tell the doctors, but when they tried…nothing. My son Richard noticed the same thing…so we weren’t crazy! After that, when Ryan would meet our gaze, Richard and I would ask him to blink once or twice. It would take a couple of seconds, during which he looked like he was really concentrating, and then he would blink as instructed.
I feel that this eye-to-eye connection awakened Ryan’s consciousness.
To be continued…