Dear Friends and Family:
Every update from me begins with an apology to you all for taking so much time off from writing. I mean it, though, very sincerely. I felt like hibernating this year and focusing on the boys, Tyson, and myself. I do have a bit to report which I will jump right into, but before I do, I need to say an enormous THANK YOU to everyone who has given to us in some way or another in the past year. Thank you to family, friends (ours and the boys’!!), our doctors, therapists, nurses, coaches, teachers, and neighbors. We love you all and you seriously make life easier on us when the days seem so difficult.
In my last update, I discussed our new vent weaning program that we had just begun which was prescribed to us by our new, amazing pulmonologist. It’s going to seem like I’m dragging out this entire discussion about his weaning, but it’s so vital and every detail matters. Nothing else can happen with respect to his recovery until he’s off the ventilator so please bear with me. Also, I think it’s important that I explain it to you in some detail so that you understand how it works and what he’s going through. Tyson was first ventilated in February of 2015, his pressure support on the ventilator was set at an 8. Over the next few years, as we struggled to get help for him, he weakened and were forced to slowly add support from the vent to make up for his weakening state. Last October when we started this weaning program, Tyson’s pressure support was at an all-time high at 15. What this meant was that the vent was giving him more support than ever and that less work was required of Tyson, which was fine, but we knew we would have some considerable ground to make up. We’ve been focusing the stem cell injections on his intercostal region and via nebulizer so that the stem cells are aerosolized directly into both lungs. You’ll see how significant the impact of these treatments has been!
To recap how the weaning protocol works: Tyson does 30 minutes, three times a day at his current pressure support setting. He does this for one week. If, at the end of the week, I feel he’s done well and had really great sessions all week long, we move on and add 30 minutes to each session for another week. This continues until he’s doing three hours, three times a day for a week. At the end of that, he “graduates” by stepping down to the next pressure support level. Typically, it takes six weeks to graduate but we’ve found that sometimes things come up with him and he needs more time which we are very gracious with. Why rush it? There is no sense in racing to the finish line, leaving him entirely unprepared. I want him to feel strong and confident each step of the way so that when it comes time for the trach trial, he’s more than ready.
He started out last fall managing each week very well! He zipped along in the first six weeks and quickly graduated to a 14 pressure support and then almost two months later, down to a 13. There have been times this year, however, that I’ve noticed him lacking energy, unable to pull (and sustain) good, strong volumes. What we discovered was that Tyson was dealing with a stubborn infection. This was the case for so much of the spring and into the summer months. He required three rounds of IV antibiotics to finally clear the infection. Honestly, exhaustion was probably a factor, too. He’s been working harder than he has in the past several years and I know this weaning is hard for him sometimes. Despite all of this, Tyson pressed on and we just took advantage of the days that he felt strong. So, some weeks needed to be repeated but he made steady progress all year long and as of the beginning of November, Tyson has worked himself down from a 15 to an 8! The significance of being at an 8 pressure support is that this is the stage at which a patient typically can begin trach trials. This was one of our big goals! Also, this is Tyson back where he started over SIX years ago! For someone who was told to “get comfortable” and to “seriously consider palliative care”, this feels like an earth shattering achievement for us. On a FaceTime call with our pulmonologist, I had Tyson on the wean at an 8 so that he could see all of his numbers, including his oxygen and heart rate numbers. He said to us, “You two do realize that at this point, the ventilator is doing very little, right?” I smiled so huge and asked him to “please repeat that”, as I put my phone right up to Tyson’s ear. He did and Tyson’s eyes lit up. Tyson is initiating the inhalation and exhalation of every single breath with picture perfect volumes and his body is calm, not distressed. I shared the news with our doctors and everyone collectively cheered and celebrated this milestone with us. And now, we are very happy to finally share this milestone with all of you!
I loosely plan things out in Tyson’s calendar in order to gauge when he might be ready to move on in his weaning schedule. So when we started out on the level 8, I mapped out the upcoming weeks and found that he’d be ready for the trach trials near Christmas. You know it would be impossible to think of a better gift than this. His pulmonologist ordered the equipment for the trial and our respiratory therapist delivered it to our house earlier this month.
I was curious when the last time he was at an 8. When did I have to move him up to a 10 pressure support? I thought if I checked my photos on my phone, I might find a few that had Tyson’s vent somewhere in the background and maybe I could zoom in and figure it out that way. I only really started keeping scrupulous notes on Tyson’s day-to-day around 2018. It took me a few minutes to rifle through over 12,000 photos on my phone, but I was able to find a photo in August of 2016 with him at an 8 and a photo of him a couple months later in October at a 10. Looking at the timeline- I had just lost my job (and as a result, all nursing help and therapies) at the end of June that year and only a few months later, was forced to add support to the vent for Tyson. He was weakening already. So, Tyson hasn’t been at an 8 in a little over 5 years and he’s just regained so much of what was lost in that time, with respect to his breathing. He is just incredible.
In mid-November, after just hitting the 8 milestone and having that conversation with our doctor, Tyson enjoyed his regularly planned weekly day off from weaning. Nothing was out of the ordinary. It happened to be my birthday, so we just enjoyed a quiet Sunday, listening to football games with the boys. The next day, I put Tyson on the wean and his volumes immediately dropped. I didn’t stress. I sat him up, gave him light percussion on his back, suctioned him and we tried again. No luck. The vent alarm started going off because his volumes were so low. I checked his circuit (vent tubing) and although I saw no indication that it was damaged in any way, I took a minute to change it out. Unfortunately, this didn’t make a difference either. Tyson was still struggling so I took him off the wean, putting the vent back in full control. I gave him that day off and we tried the wean the following day. His volumes still plummeted. I was confused and frustrated. This was one of the millions of moments that I wished Tyson could tell me how he was feeling but because he was unable to, I relied on what I saw on the machine and the numbers on his pulse oximeter. Our doctor ran some labs the following day. In the meantime, we tried the wean every day for the next month. Not a single day looked the ones we’d seen in the previous months. Where he was once starting out of the gate at tremendous, FULL volumes, he was now straight plummeting within his first few breaths. I told Tyson to just do what he could and we’d call it progress. Some days, all he could muster was 15 minutes and other days, he was able to do three 30 minute sessions. But no session started without a rocky first ten minutes. What a jolt this felt like. We had JUST reached a very significant milestone and the following week he was suddenly incapable of doing what he’d been doing for months? I resolved to look at this as a quick sabbatical that he’s earned. Our pulmonologist encourages breaks for Tyson and reminds us all the time that this process will be lengthy, with two steps forward and three steps back. We must not get discouraged.
We learned from his lab results that his sed rate was high, indicating an active infection. We began a small course of antibiotics. I actually felt relief with this news because this was precisely the contributing factor in the spring/summer that made the weaning challenging for Tyson. At least I could attribute his latest struggles to something, because sometimes, it’s exhausting keeping my thoughts positive when Tyson’s not doing particularly well.
I taught Cal how to read some of the vent numbers. He knows what to look for and what parameters we like to see those numbers in. So, when I put Tyson on the wean, I let my little sidekick know and he immediately runs into Tyson’s room and starts hyping him up. Abe cheers him on, too, giving him hugs and saying, “Good job, daddy! You can do it!”. I still see some apprehension with Abren; I suspect even at the age of 7 1/2 he’s not quite sure what to make of all the equipment that his dad’s hooked up to. Anyway, every day for a month we have been literally by his side during the wean attempts and he has finally rebounded! Because of the nearly month-long/weak weaning situation, I bumped him back up to a 9 to help him recover those muscles. Remember, weaning is like marathon training and anyone would need an extra boost of assistance to recover from a month-long hiatus.
I’m very happy with where he is currently. When the trach trial equipment arrived a few weeks ago, he was in no real position to attempt the trial, but we set everything up, I got a lesson on how to operate everything and we did end up trying him for a few seconds. During the trach trial, the vent is off, we have a PSI compressor and a warming humidifier (forgot the technical name) and together they provide him with steady room air. We have oxygen tanks in the room which we can layer in for extra support, but we’ll figure that all out in time. After being accustomed to a ventilator for every single breath for the past six years, I imagine having it turned off completely feels a lot like being shoved off a cliff, praying your parachute opens up. He did fine but he began to de-stat after about 15 seconds so we hooked him back up to the vent. I didn’t care a bit that he only did 15 seconds. I was so proud of him. His healing is not linear. This is a perfect example. We had to slow down and now he’s showing us he’s ready to go again. Everything happens at Tyson’s pace. I remind him of this daily. We will try again in a few months when he’s successfully mastered the 8 pressure support.
Watching Tyson REGAIN STRENGTH is my favorite thing ever 🙂 And this has encouraged us to begin researching tilt tables for him! Our main objective remains getting him off the vent first. Once that happens, the stem cells will no longer be needed in that area so they’ll head to another area of his body. In the meantime, we can absolutely begin standing him up gradually.
During our quarterly visit with Dr. H., we revisited the subject of finding a neurologist to join our squad 🙂 Any Lyme patients reading this fully understand how challenging the prospect of finding a Lyme-Literate neurologist is. In our 11 years dealing with Tyson’s illness, we’ve been yelled at and dismissed by top NYC neurologists who said, “Lyme doesn’t do this! Stop asking about it!”. Good times. Dr. H. mentioned in conversation that he has a friend who is the Chief of Neurology at Mass General who understands both stem cells with their incredible healing abilities and Lyme disease. “Let’s get her on a call. I’d love her to see what Tyson’s doing with the weaning and the stem cells!”, he said to me. I sent her an email the next day with my elevator pitch, telling Tyson’s medical story and asking if she’d be gracious enough to have a consult with us. She replied right away and said, “Yes! I’d be happy to help.” I scanned and emailed the most important scans, tests, doctor letters, etc. so she could get a good picture of Tyson’s history. When we spoke on the phone, she told us that she’s only ever seen two people with ALS symptoms become strong enough to wean completely off the ventilator. She was very impressed with Tyson and suggested a medication/supplement combo that was in the final stages of a clinical trial that would support cellular energy. We will iron out the details of trying this out for Tyson in the new year.
As she and I spoke, I took the opportunity to ask her about Tyson’s jaw which is essentially locked shut and has been so since his cardiac arrest in 2015. I told her that I didn’t understand why he was able to move his mouth moments before he coded in the emergency room that day and then upon waking up (after the 35 minute cardiac arrest and hypothermia protocol), his jaw didn’t move and he could hardly open his mouth. She said to me, “Well, the part of the brain that controls his jaw movement was very likely void of oxygen while he was experiencing the cardiac arrest.”. That got me thinking about just what happened to his brain during that horrific episode. I remember trying to quickly research “what happens to your body during a cardiac arrest” one night at his bedside in the ICU. When I read the survival statistics and that if your heart stops beating, it cuts off blood flow and oxygen to the brain, I was done. I hadn’t looked into it since. But I’m glad we had this conversation because it’s important that I truly understand on every level what he’s going through. By comparison to what we were faced with immediately following the cardiac arrest: getting ventilated, waiting for a bed at a respiratory hospital, literally just making it through the weekend alive, handling the boys gently through all this, etc., worrying about how much damage was caused to his brain wasn’t even on my radar, nor the radar of any of the doctors for that matter. So, I’m doing lots of reading and trying to educate myself on ways to help him in that area. There are simple things we can do and funnily enough, some of them are things we’ve been doing all this time, unaware of how deeply helpful they’ve been. Things like playing his favorite music, his favorite movies and shows, playing classical music, playing books on Audible, and so on. All of these things help restore his neurotransmitters. And as for his jaw, she suggested we try botox into the muscle to relax it. This is a better option than a general muscle relaxant because a muscle relaxant would render his whole body “relaxed” which would undoubtedly interfere with the muscles that are working so hard to get him off the ventilator.
I think about the night of the cardiac arrest a lot. I remember sitting alone with him in the dimly lit room in the ICU, holding his hand while he slept, trying to process what had just happened. I really tried to imagine what our life would look like but couldn’t see past the next 24 hours. I thought things would go back to “normal” in a few weeks. I was incapable of foreseeing the heavy, soul-crushing, deep grief I was destined to feel every single day because of what had happened to Tyson that night. I grieve him, us, our old life every day. It’s a process getting through this and with everything I do, I think of him and I think about making him proud. Trying to be at peace with where we are is a constant challenge, too, and rather than being so upset that he’s been like this for so long and angry for what’s happened to him, I continuously try to shift my/our thoughts to being grateful that we’ve been afforded this time to work at getting him better. We’ll get there, I know we will!
In closing, if I may, I’d like to ask you all for your continued prayers: please pray that Tyson continues to get stronger, physically and mentally, pray that the boys keep their positive, joyful attitudes as they continue to grow, pray that I keep my strength up to continue to care for Tyson and lead our family through this phase of our lives, and please pray that our doctors, nurses, and therapists continue to find the best treatments for Tyson and continue to help him heal. I know the healing power of prayer and I’ve witnessed so many miracles along this journey, so thank you!
Merry Christmas and Happy Holidays to all of you!