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.
This is when I started taking the weekday daytime shift. I was relieving my son, Richard, who was with Ryan during the night. I had no idea what to expect. Since Ryan was in a coma, I assumed that I would just have to sit by his bedside and let the professionals do their jobs. For about 15 minutes, that was about right. It was quiet, my son went over all the monitors hooked up to Ryan and what the numbers meant, and the ranges they should be in.
Ryan had an infection and it was causing the numbers that had to be taken into consideration to spike. Also he had a breathing tube and a feeding tube down his throat that were causing problems. But doctors had to stop the infection before they could do the necessary surgeries to replace those tubes (with a tracheotomy to replace the breathing tube, and surgical insertion of a feeding tube that would go directly into Ryan’s stomach instead of down his throat). Ryan could not breathe on his own, so he needed a breathing machine. He was taking in food and liquid, so even more tubes were required to remove the waste. He had cuffs on his legs that would expand and contract to aid his circulation
Then the day started. Rich stayed with me so I could get into the routine. A nurse came in to change the linens, wash Ryan, and change his bed, clothes, brush his teeth, put cream on, change his dressings, suction the fluid out of his lungs and airways, give him his meds, and adjust all the monitor hook-ups. Since Rich was familiar with the routine, he assisted the nurse. This was good for several reasons. It was done correctly, and it gave the nurse the time to go the extra yard, and the time to train us and answer questions.
Next, a team of doctors and trainees (and every other day, the head of the department) would come in and gather around Ryan, go over the charts and history, and decide the next plan of action.
Soon after that, Rich left and Karen, Ryan’s mom, and Lauren, his sister (13 years old and starting high school in a week) came in. Karen immediately started tending to Ryan. She would check him from head to toe, make sure any rash or bed sore was treated. At this time, she showed me the log book and what information needed to be recorded. All medications or instructions were entered along with the time and quantity, and any problems problems were noted. In the future, the log book evolved, as more information was gathered. Karen would wipe all surfaces with sanitizing wipes, as Ryan’s infection was still the main issue. She would then meet with the staff responsible for Ryan’s treatment.
Social workers, therapists, and specialists would come by and explain the lighting and calming mood of the room. Ryan loved music, so Karen brought in an iPad and had Ryan’s music playing in the background. There was no harsh light or noise. As the weeks went by, Karen and Lauren kept bringing familiar items and pictures from home. At about the third week, although he was
still in a coma, Ryan’s eyes were open. We would show him the pictures and familiar objects – and there was absolutely no response. We would talk quietly and explain what happened to him, and what was being done to heal him. He was told that his family and friends across the country were praying for him, and that when he was better, his dad would take him to Turks and Caicos for a vacation. (When Ryan talks about it now, he has a memory of trying to respond to all this, but couldn’t.)
By the middle of the afternoon, things started quieting down and I thought Ryan and I would have a restful afternoon. Although in a coma, Ryan’s body still worked, and he would get quite agitated and start pulling on all the tubes and monitor cords, trying to pull them out. I had to stand over him, and as gently as possible, move his hands away. That would not stop him for long, and he would get more determined to remove them. At one point, staff put giant mittens on Ryan’s hands, but he managed to find a way to get them off.
The point I want to make here is that if someone wasn’t with Ryan, he would have succeeded in pulling his tubes out. He was even tugging at his catheter again and again. All the tubes were hooked up to monitors, so alarms would go off, and if it had continued, the hospital would have had to take some kind of measures to prevent him from doing it. A nurse would have to leave another patient or duty to re-attach Ryan’s tubes, but it wouldn’t stop him from continuing to pull at them. But because someone was always with Ryan, he was never successful at pulling out any of his vital tubes.
Thinking about this now, what if someone wasn’t there every minute to stop him? How would the hospital have solved this problem? And there were so many other reasons to be there. Ryan’s sheets would bunch up, he would slide down in the bed, the bed pads would fold up. All these little things could cause circulation problems, infections, and bed sores. Ryan had to have a chest x-ray every day to be sure he didn’t contract pneumonia. There was always something to tend to. Every minute of the day and night was a new experience.
Grandpa’s Corner: Correction to a statement in Article #5
* From previous Article #5
At about the third week, although he was still in a coma, Ryan’s eyes were open. We would show him the pictures and familiar objects – and there was absolutely no response. We would talk quietly and explain what happened to him, and what was being done to heal him. He was told that his family and friends across the country were praying for him, and that when he was better, his dad would take him to Turks and Caicos for a vacation. (When Ryan talks about it now, he has a memory of trying to respond to all this, but couldn’t.)
Correction to the above information:
There was actually no response when Ryan was in the coma. It was probably 5 or 6 weeks before he showed slight signs of recognition, but no response. It was noticeable in his eyes–his eyes would meet mine and focus briefly on me –but that didn’t always happen. During certain parts of the day (usually when he was rested) I would be able to hold his gaze. In the beginning it would only be for a minute or two, and never when a doctor or therapist was there. At that point, I knew in my heart that it was a breakthrough.
Progress came in plateaus. The recognition grew a little at a time, and a little more often. The first response came with blinking his eyes when asked, but not all the time. It was a step.
As the recognition got stronger, doctors and therapist would give Ryan commands, but he was not able to do them. The first real breakthrough came with a thumbs up. The doctors and therapist told Ryan to give a thumbs-up if he understood a command. At first, Ryan would just look at them. It took about a week, during which his hand and fingers would twitch. And then he got the thumb up. Celebration! (It was at this time that Ryan has said he was aware of being given a command, wanted to do it, but had to figure out how to do it.)
Coming out of the coma, Ryan slowly began to function again. And even though Ryan still could not talk, walk, or swallow, he was having physical, speech, eating, and occupational therapy to learn how to do these things again. Later he even went to school classes.
I should mention that after a month at North Shore LIJ hospital, Ryan was transported to Blythedale Children’s Hospital in Valhalla, NY, home of a program that specializes in long-term care and recovery for TBI patients. He spent the next 6 months at Blythedale, where all these programs took place.
My next article will talk about Ryan’s step-by-step recovery.
Grandpa’s Corner #6
Moving from Phase 1 to Phase 2
By Richard Radecki, Grandpa
In re-reading article 5 and the correction, I feel there was still some confusion. So let’s call the five weeks Ryan spent at North Shore LIJ Phase 1. During this time, doctors were able to stabilize Ryan’s vital signs and infection enough to do four surgeries, install a plate on his left leg, hip to knee, install aplate on his broken clavicle (chest bone), perform a tracheotomy, install a feeding tube directly to his stomach, and stabilize his fractured pelvis.
Keeping Ryan alive and fixing his broken body required everyone’s efforts. After five weeks, although Ryan’s eyes were open and he was breathing on his own, he showed no signs of coming out of the coma. It was time for Phase 2. Ryan would have to be transferred to a rehabilitation center that specialized in Traumatic Brain Injury (TBI).
Karen and Rich (Ryan’s parents) were given a list of those facilities. There were many things to consider. Karen and Rich spoke to all the professional people for their opinion, and three places stood out, any one of which would be acceptable. They made appointments to see all three. They finally chose Blythedale Children’s Hospital in Valhalla, NY. It was further than the others, but it was all highway driving, and as long as rush hour was avoided, it was a very pleasant drive – less than an hour. Blythedale caters to teenagers and children, so they have school classes for every grade. All the facilities, doctors and staff are geared for young people. It is very well-organized, and every level of recovery is addressed.
Remembering how important the positive feeling was in the waiting room that first night of Ryan’s accident…that’s what got us through Phase 1. At Blythedale we couldn’t help but feel positive that Ryan was in the right place.
Phase 2: My first impressions of Blythedale
I arrived between 9 and 10 AM, and it didn’t feel like walking into a hospital. The lobby was bright and had a huge tropical fish aquarium along one wall. I signed in and was given directions to Ryan’s room. Walking down the wide, quiet halls, I noticed that the rooms were mostly empty. I met my son Rich in Ryan’s room. I asked where everyone was and I was told they were either in school classes or therapy. Ryan’s room was large and bright, and he was the only patient in the room. The room had a large bathroom, a round dining table and chairs, along with plenty of open area with lounge chairs and a place to make a bed for whoever was spending the night with Ryan. This was very different from North Shore LIJ hospital, where Ryan’s room was set up with low light and quiet, so that Ryan could rest and heal (as if a hospital is ever quiet or restful).
I had no idea how they were going to deal with Ryan’s TBI, as he still showed no signs of coming out of the coma. Up to now, there was no indication of brain activity or reaction to any stimulation. Where do you start?
The answer was…they went back to basics. Ryan’s room was set up to reflect normalcy. There were more family visitors, lively sounds and conversation going on all around Ryan. Karen (mom) and Lauren (sister) decorated Ryan’s room in colorful holiday themes and traditions. Music was playing or the TV was on. Everything was designed for familiarity and normal family life.
One of the first things the Center provided was a special mattress for Ryan. The physical therapist laid down a computerized mat for Ryan to rest on. A computer screen showed Ryan’s weight distribution on the mat in a grid of light. The mattress was designed with air pockets that lined up with the grid. Since Ryan was still bed-ridden—and even in the future would be spending so much time in bed—it was important to avoid bed sores. The air pockets were adjustable to illuminate any hot spots, so that Ryan’s weight could be carefully distributed for his comfort, circulation, and safety.
Ryan was not able to exercise. But his physical therapist would massage and stretch all his muscles and joints for him. Hisspeech therapist would touch and identify Ryan’s mouth, then place liquid droplets containing familiar smells and tastes on his lips and tongue.
And so Phase 2 began.
At this time I want to point out that all the rules from Article #3 (scroll back to Article 3 where the rules are listed) were as important or more important for setting up and carrying out this crucial Phase 2 of Ryan’s recovery.