November 21, 2015

Hello friends and family, 

I am so sorry to all of you for not keeping you updated over the past few months. This was not my intention. These few months have been the most challenging, mentally and emotionally draining and overall exhausting months of our lives and I’ve found it difficult to stay in touch. Having said that, I am elated to share with you first and foremost that Mr. Tyson Fowler is doing well. 😊 He has not declined. In fact, he’s making some wonderful progress. Let me take you back to March… 

I told you before how happy I was to see Tyson after his tracheostomy. He instantly looked healthier and calmer. I love this picture of him because after watching him struggle for every breath for way too long, he finally looked peaceful.

 Tyson was transferred out of ICU and into a private room in the Telemetry unit after one week. Truthfully, the only thing they were focusing on was his heart rate which was elevated to around 120. Still, Tyson remained hooked to monitors. Audrey and I continued to do shifts so that Tyson was never alone. Understandably, the more he “came to”, the more scared and nervous he became, so having one of us by his side at all times put him at ease. This also meant that I could be home with the boys after school for dinner and bedtime. I quickly came to the realization that everything was going to be a challenge with respect to “learning” Tyson all over again. Maybe I was in the clouds a bit and overwhelmed with the fact that I had almost lost my husband, but for some reason, I had it in my head that Tyson would bounce back right away from everything. I mean, the days leading up to his cardiac arrest, Tyson was sitting up in his chair and talking to me. How was it possible that he now was unable to open his mouth or hold his head up? All I wanted was to hold him. I was happy when he slept and so anxious when I couldn’t understand him. I could always make him comfortable before and now, I was afraid to touch him because he was so fragile. I had to guess what was bothering him, in terms of positioning or his pain levels, etc. The nurses in ICU gave us a picture chart to help us communicate. I sort of laughed at it when they first gave it to me, thinking “we don’t need this silly thing” and moments later found myself trying to use it with him. We fumbled through and he could barely give me an indication of a simple “yes” or “no”. Extremely frustrating for both of us. I think Tyson was very much in shock and confused as to why he couldn’t move his mouth. At most, his upper lip would move. He was trapped in his body. Still, all I could do was thank God that he was still alive and find a way to move forward. 

 As I mentioned before, immediately following his trach procedure, the respiratory therapists and pulmonologist started Tyson on a vent weaning regimen. It was clear that Tyson was not fit to come home and as much as it bothered me to admit, I wasn’t trained to handle his new set of critical needs. Our goal was to transfer to Gaylord Rehabilitation Hospital in Wallingford, CT to continue the vent weaning process, as Tyson was far from being able to come back home. The doctors at Gaylord were able to monitor his progress remotely which aided them in making their decision on whether or not Tyson would be a good candidate for the weaning program. I traveled up to Wallingford on a Wednesday to view the facilities and meet with the care team and respiratory team director. They talked about their program and expectations and how they monitor each patient. They asked for his medical history and I proudly described our journey but naturally found myself choking on my words a bit as I explained his cardiac arrest. Still, I remained confident that Tyson was strong enough to get through this, despite the worried looks on their faces. Being strong is part of the reason we are still here. And being strong, in my opinion means being able to stay focused and have faith when everyone around you is telling you how or why it won’t work. It takes a lot of pep talks between Tyson and I as a team to power through. Anyway, that’s how I felt that day. I won’t forget that feeling. I asked if I could stay with Tyson and they said although they’ve never been asked, it would not be a problem. I asked how long they anticipated Tyson’s stay to be and they explained to me that it depended on his progress; it could be anywhere from 2-8 weeks. We would plan on 4 to start. The following day, he was accepted into their program and we were set to discharge Greenwich Hospital on March 6th. I arranged to have my dad bring the boys upstate to my mom’s house. At this point, I was definitely running on adrenaline but packing the boys up and sending them away was absolutely heartbreaking. The night before the transfer, I brought the boys to the hospital to see Tyson. It was normal for him to sleep on and off during a visit but this visit, he stayed awake the entire time. I don’t regret bringing the boys to see him, but it was heartbreaking trying to explain things to Calvin. Tyson got very upset seeing Calvin’s reaction which was understandably very distant. Regardless, I felt strongly that we needed to all be together that night. Here’s a picture of Abren saying “goodbye” to Tyson. ❤️ 

 The following morning, I packed up the kids’ things, fed them breakfast and cuddled with them one last time. I headed over to the hospital and met Audrey. We went through the normal discharge process, I signed a bunch of papers confirming that I understood his needs, how to care for his PICC line and other similar details. The plan was for me to follow the ambulance up to Wallingford, CT. When they came to the room to transfer Tyson onto the stretcher, we were ready to go. 

 Once they carefully loaded Tyson onto the stretcher, they switched his ventilator from the hospital one to a transport one. I spoke with the respiratory therapist and the two men who would be traveling with him and asked them to give Tyson a few minutes to adjust to the new vent before heading out. Tyson gave us the “green light” and they wheeled him out to the ambulance. At this point, Audrey headed back to the house where she met my dad and the kids and began their trip back home upstate. I followed the ambulance to the Merritt Parkway as we headed north an hour to Wallingford. 

 We arrived at Gaylord around one and got settled into our room. Tyson slept most of the day but we still met with a few doctors and members of the Respiratory team. Each time I was asked to explain Tyson’s situation and medical history, I felt like I was trying to sell it to them. Trying to explain how Lyme was largely responsible for his current condition was challenging. And then when I added “and he receives ongoing stem cell therapy in India”…well, I may as well have said we were from Mars. I didn’t care. We were there to get help with the ventilator. As much as I’d like to say their opinion on his diagnosis didn’t matter, it did matter when I tried to get them to administer Ceftriaxone (his IV Lyme antibiotic). The doctors at Gaylord weren’t familiar with Lyme or any appropriate treatment measures and wanted more information. I gave them Dr. Horowitz’s info and Dr. Murphy’s and said they’d be happy to help. Instead, they called the infectious disease doctor at Greenwich Hospital who had made it clear that he didn’t believe Lyme existed in the chronic form and would rather give Tyson a straight diagnosis of ALS and said the antibiotics were unecessary. Before I invested an ounce of my energy to fighting this decision, I asked Tyson, “Do you want the Lyme meds?” He looked at me and mouthed “yes.” That’s all I needed to hear. So, I had a conversation with the doctors with supporting evidence that the bacteria can linger in the body and that Tyson felt better with it, etc., and before long, it was approved. 

 Right away, they resumed  the weaning process. To start things off, they wanted to get sort of a baseline and put him on a setting that offered very little support and forced Tyson to see what he could do. Honestly, it seemed like the equivalent of pushing him off a cliff. He couldn’t breathe, wasn’t ready for it and wanted to stop. I struggled for a moment about whether or not I should just trust the process or speak up. I jumped in and said, “I think this is too much- can you switch him back?” They did. Personally, I thought Tyson could’ve lasted longer with that short trial but it just goes to show that this all needed to be at his pace and comfort level. I’m sharing this story is because it’s important to understand how Tyson felt through all of this and from where his fear arose . He had no control over his breathing and needed to rely on others for the controlling and safekeeping of his vent. That was crippling to him. In order to get better, he needed to trust himself and his team of therapists to take care of him. Over the next few days, we met two RT’s in particular, Ryan and Melissa, who were SO amazing. They were calm, supportive, and clearly put Tyson at ease. He began weaning every day, starting out small and gradually increasing his wean times. Their support and encouragement helped fuel Tyson to keep moving forward. One of the wonderful benefits of weaning is that it’s exercising his diaphragm and that encouraged him every time. He began taking a few sips of water each day, too. Tyson had a physical therapy session each morning for 30 minutes and in the afternoon for about the same amount of time. They got him up and in a chair on our second day there! Tyson was very upset that it had a head rest but he knew he needed it and I reminded him that it was temporary. Below is a picture of Tyson during a PT session. Tyson’s body was so incredibly stiff from the cardiac arrest, so the therapists just focused on basic range of motion exercises and even just sitting upright like this was a huge step. 

 The “in-between” times looked like the picture below. Sometimes we would watch tv but he mostly slept. We had a word chart that we got pretty good at using to communicate. It was five lines with a section of the alphabet on each line. I’d go through the lines and when I got to the one that had the letter in it that he wanted, he would raise his eyebrows. Helps if you remember each letter as you go, haha! Tyson would finish spelling a word and I’d say, “wait, what was the first letter?” He did his best to roll his eyes ;) If Tyson wanted to get my attention, he would make a little “raspberry” sound with his lips. It was very faint but I could work with it. 

 The Respiratory team wanted Tyson to try a speaking valve so that we could hear his voice. It’s something that they’d attach to his trach tubes and by manipulating the settings and deflating the cuff (a balloon that’s inside his esophagus) we could hear his voice. However, this process was so difficult for Tyson. After the first attempt, he was extremely fatigued. He looked like he had just played an entire game of basketball. He did not like it one bit. Again, I struggled with finding the right balance of gently pushing him when I knew it was safe and letting him sort of skate. I know it must seem cruel that this was even a question for me but I felt responsible for pushing him in the right way so he didn’t give up. I needed to be there to tell him how strong he was but also listen and comfort him, too. I remember specifically one day, Ryan was giving Tyson a pep talk telling him how good it was for him to try the speaking valve and that he knew Tyson was capable of making it work and Tyson just broke down in tears. I asked him what he was afraid of. I said, “honey- you’re safe, the vent will pick you up if you miss a breath and Ryan will change you back to your settings if you’re having trouble.” He was trying to tell me something but I couldn’t understand him so I grabbed the chart. He spelled out, “I died.” Well…that was a poignant moment. Tyson was so overcome with the fear of what had happened on February 19th that it was preventing him moving forward. What I quickly learned was that Tyson knew best. Even at this most fragile state, he knew his body and knew his limits. He is so strongly attuned to his breathing that he can detect an issue before the incredibly sensitive vent alarms catch on. And he’s always right. Always ;)  This is such an amazing ability and has proven to be very helpful. Once I understood that, I could continue to be his coach and cheerleader on the side, following his lead. We didn’t get too far with the speaking valve over the course of our stay, but that didn’t bother us. His recovery would continue at his pace. 

 The speech therapist was eager to have Tyson try a machine that would allow him to speak by moving his eyes (I forgot the name of it). I told her we were not interested in that but rather in exercises geared to bring back what we had recently lost a couple of weeks ago like jaw opening exercises and swallow techniques. Again, this is where the diagnosis of just “ALS” hurt us. They didn’t believe he would improve and were focused on making him comfortable and adjust to this new condition. If we believed he was solely dealing with ALS, we would’ve likely welcomed the speaking machine. But we had seen him decline and rise from it over and over again in the past. We didn’t believe that this was right for him at the moment. Regardless, Tyson gave it a shot, probably because he could tell she was really anxious for him to try it. The machine kept freezing and eventually she had to just shut it down. I can’t tell you how much I miss the sound of his voice, but honestly, Tyson and I communicated just fine with the word chart. The other thing we did with the speech therapist was a swallow test. First, they tried to send a small scope up his nose to try to look at his swallowing capabilities. Unfortunately, it wasn’t until the scope was already in his nose that they discovered he had some cartilage or something that was blocking its path. The next option was to have Tyson swallow some milky formula while viewing through some sort of X-ray machine. There’s a name for all of this, forgive my crude description. They hoyered him out of bed and into a wheelchair and brought him downstairs for the test. I came along to be his voice and to keep him calm. They placed a lead vest on him as I watched from the other room with the nurse and therapists. You could see his esophageal muscle on the screen as it opened and closed like a gate as he swallowed the formula. By the fourth sip, the muscle had weakened and as a result, some had slipped into his lungs. This is called aspiration and is dangerous because it can cause pneumonia, among other things. What this meant for Tyson was that he was not allowed to drink anything other than water. We were both pretty bummed as we headed back to the room. We got over it in about 24 hours.  
 Tyson was eventually weaning for 16 hours a day. Show off ;) We were thrilled with his progress and truthfully wanted to lengthen our stay, but the doctors decided that four weeks was enough. They gave us our discharge date of April 6th. There was much preparation to do in order for him to be able to come home. I needed to have all of the right equipment available and delivered to the house, I needed to arrange for nursing care to help me with Tyson and I needed to be trained to handle the ventilator and his trach. This meant undergoing 10 hours of vent training, including how to do an emergency tracheotomy, how to troubleshoot in an emergency situation, and how to do circuit changes, as well as daily trach dressing changes. We had met an outstanding respiratory therapist at Greenwich Hospital named “Muggsy”. In fact, from the moment Tyson was scheduled for his tracheostomy, doctors and nurses were asking me, “Have you met Muggsy yet? She’s the best! You have to meet her!” Anyway, I met Muggsy in the ICU and she convinced us to try for Gaylord and told me the best vent company was PromptCare and that she’s worked with a man named “Guy” there for years. So when it came time to get our own vent, the case manager at Gaylord set us up with Guy at PromptCare and we are so fortunate for that connection! I traveled back to Greenwich to meet him at our house. He needed to learn more about Tyson and make sure our home was safe for a vent and that we had enough outlets, etc. Guy was very upbeat, positive, and matter-of-fact, which I love. The house passed his inspection and we agreed we would meet the next day at Gaylord to begin my training. If you knew how much I avoided science classes in school, you’d laugh at the thought of me learning how to use a vent and care for a trach. But becoming well- versed in the care and maintenance of his vent and trach meant that he would be allowed home. As I was learning the process, I’d begin to apply what I had learned to Tyson and watch eyes sort of bug out as I got near his trach. He’s so patient. I picked it up pretty quickly and now it’s truly like second nature to me. I traveled home a second time to receive the new hoyer lift, the hospital bed and the new wheelchair. Ugh. Vanessa, Katherine and Gia met me at home and helped me move furniture, clean, and reorganize in anticipation of Tyson’s home-coming. We are blessed with the greatest friends. I kept reminding myself that this was all temporary. It certainly doesn’t make it any easier, but it’s all I could do. 

The last Sunday at Gaylord was  Easter Sunday and Tyson asked to have his hair cut. I put on some music and one of our favorite nurses, Kristen, helped me shave his head. It was a great ending to our stay seeing Tyson smile and try to rap at the same time ;) 

 All told, the four weeks spent at Gaylord were very productive and valuable. Tyson came home stronger than when he went in, he proved he could wean, he was able to sit in his wheelchair for longer periods of time, and his neck got slightly stronger. I was also more comfortable caring for him. The four weeks spent at Gaylord also allowed us time together to process everything that had happened and make a plan to move forward. Every day was challenging and we broke down a lot, but we are much stronger now. It was extremely difficult being away from the boys. Abren had started crawling and Calvin grew an inch, I think. We tried FaceTime with Calvin but it only made matters worse. He cried because he missed us so much and wanted us all to be home together. It was actually better when we didn’t speak and I checked up on him through my parents. He had a lot of fun when he wasn’t focused on the fact that we were apart. 

 Tyson came home on April 9th. Guy got to the house first to get all of the equipment set up. Once the ambulance pulled up, we got Tyson into his “new” wheelchair and brought him into the house. He was so happy to be home (and to watch SportsCenter on the big living room t.v.). He was exhausted and only stayed up in his chair for about an hour. This picture represents about a third of his medical supplies. I got it all sorted out and stocked the hall closet, the guest room, and Tyson’s bedside table. 
 The boys came home the following day. Poor Calvin cried tears of joy as we hugged each other in the kitchen. Abren just stared at me and Tyson :) It took my breath away to see Calvin reunited with Tyson.

  We resumed in-home physical therapy Monday morning. It was great to see Mike and he was happy to see Tyson home safe and sound. He brought Tyson a new Bob Marley t-shirt to replace the one that was cut up in the E.R. The sessions ran for an hour each, Monday through Friday. Tyson was still incredibly weak at this point but Mike was able to feel flickers of muscle contractions throughout Tyson’s body. To strengthen his core, he did edge of the bed sitting with Mike or myself holding him up as he would bend down at the waist and come up. We watched over the next several weeks as Tyson’s strength improved. It is truly astounding how well he responds to the right physical therapy. We had a couple of therapists come visit him to see if they could offer help and treat him and they all declined. Said there was nothing they could do. And here’s Mike working so hard with Tyson and getting incredible results. It’s awesome. After PT, Mike helps us get Tyson hoyered up and into his chair for a few hours. The sitting position for Tyson is so valuable because it opens up his lungs and diaphragm, helps strengthen his neck and core, and allows him to be social with the family. Over the summer, Tyson started to wiggle his hips, something he has been incapable of doing for a long time. We continue to see Mike on a regular basis and just last week, he found NEW muscle contractions in his hamstrings! We treat each session like he’s training. We play music and Tyson is very focused with every move. There’s a photograph hanging in the living room of Tyson dunking a basketball in a high school game. Mike taps the photo on the way out like he’s leaving a locker room and heading out to the field. Makes us laugh and makes Tyson smile every time. 

 We have also had a few phone consultations with Dr. Horowitz, who is guiding us with the treatment of the Lyme disease. A few months before Tyson’s cardiac arrest, I had emailed him and pleaded with him to “take on” Tyson’s case. He has a waiting list that’s a couple of years long so we have been seeing his awesome associate, John. Because Tyson’s case is so rare, Dr. Horowitz would pop in to see us each visit. I read his book, “Why Can’t I Get Better?” and have been using it like a text book. In there, he outlines some suggestions for treatment of chronic neurological Lyme. I was hoping he could help. I shared with him the protocol (which was similar to one of his suggestions) that was used on a patient from Germany who had Lyme with ALS and who had also received human embryonic stem cell therapy with Dr. Shroff. We have become good friends with this woman and she has been a great source of motivation and encouragement for us. She was given 3 months to live and has defied all of that. She’s now very healthy and strong. Anyway, his office called me while Tyson was in the ICU and said he’d be happy to help as soon as we were ready. In July, we discussed his case at length. He treated Tyson with some antibiotics for a 3 month period over the summer which really seemed to clean him up a bit. It was during that time that Tyson wiggled his hips. 

 As for how the boys adjusted to Tyson, I would say that they both handled it better than what might have been expected. Calvin cried a lot when he first got home. He told me he didn’t want daddy to get old. I knew what he meant and it killed me. I just constantly reassured him that daddy was good and getting stronger everyday. He also wouldn’t go into Tyson’s bedroom for the first few weeks. I think the machinery and equipment scared him. He would hide his head on my shoulder as I carried him in there to see Tyson. This was obviously very painful for Tyson, for me, and for Calvin. We didn’t want to force him to hang out with Tyson. We wanted him to become comfortable and spend more time when he was ready. Soon enough however, Cal was asking me to put him on Tyson’s bed so they could watch tv together. They watched skateboarding, baseball, golf, and basketball. He comes home from school everyday with drawings of himself and daddy. ❤️ 

 Every time I bring Abe into the room, he yells out “daddy!” Sometimes I place him on the bed in front of Tyson and they stare at each other and make faces. Tyson taught him how to purse his lips and make a kiss. I place Tyson’s hands on Abren so he can feel like he’s holding him and so little Abey can feel his daddy’s touch. Moments like these are so beautiful. We are so grateful Tyson’s here with us. 

 We were also extemely blessed and fortunate to have had six months of nursing care covered for us when we came home, the costs of which were paid for by a private donor. These nurses all had extensive backgrounds in critical care which included knowledge of vent/trach, iv meds, iv hydration, nourishment assessment, among other things. Because of their care and support (and the support of myself and the two boys), Tyson has been steadily improving and thriving in this environment. They have helped keep Tyson safe and stable, which is an enormous feat for someone in Tyson’s critical condition. Most importantly, having their support and expertise has allowed for him to be home with his family rather than in a hospital or nursing home where he would be at risk for infection, not have access to the world class physical therapy he receives and be separated from myself and our two boys. We’ve formed wonderful bonds with our core team of nurses and are forever grateful for their outstanding care and compassion. 

Presently, Tyson’s case can be best described as complex but stable.  He’s undoubtedly survived something that, by all rights, he shouldn’t have.  There is absolutely no question in our minds that the stem cells had a significant role in his survival and continuing recovery. Tyson remains fully dependent on the ventilator and requires care around the clock. His eyes move slowly and it takes a while for him to focus. His mouth is moving better. He’s making progress with the PT, we have slowed down with the vent weaning but will pick it up again soon, and above all, he is happy to be home. He is emotionally stronger than he was two months ago and remains a fighter. At one of his lowest moments, he said to me, “I understand why people give up.” I said to him, “I know this is difficult but you’re not quitting.” He smiled and said, “no, I’m not.” Our home isn’t the same without Tyson’s voice and laughter. I still find myself talking to him from another room, asking him questions and waiting for a response. I miss him and I know he feels the same. We do everything we can to create happy moments and keep him upbeat. Despite our efforts, however, it’s not easy. We are both beat and longing every day to have our old life back. Based on what I’ve seen in tyson, I have complete faith in a full recovery. It will take a lot of time and a lot of hard work but we know it’ll happen. We have excellent support from our team of doctors who remain committed to seeing Tyson through this and to ensure he gets everything he needs along the way.  It has honestly seemed as if the “reset” button was hit on Tyson and he’s been given a chance to start from scratch. 

Believe it or not, there is still more for me to update you on and I will do a better job of that going forward. I want you all to know that I share every single message, email, text, and phone call from you with Tyson. You wouldn’t believe how he lights up!  He talks about his old high school buddies, his big family, his Polo family and everyone in between. You all mean so much.  Your support over these past couple of years has been phenomenal. We are so lucky. With that said, I would like to ask for your help, if you are able this holiday season. Tyson’s medical costs remain a constant burden for our family. Any donation would greatly impact our family and Tyson’s road to recovery. If you would like to donate, please see the attached link for the gofundme account that has been set up on our behalf.

Thank you and Happy Thanksgiving!

-Ann & Tyson 

Monday, March 2

The Thursday before last (February 19th) began like every other day had that week. Tyson’s aide had arrived in the morning and my dad (who was visiting for the week to help because I had to work late) helped me get the boys ready in the morning and off to school. Tyson’s PT time was scheduled for 2pm. I came home for lunch by 1 so that I could give Tyson his feed and get him ready and out of bed in time for Mike to arrive. Our routine for getting Tyson comfortable with his breathing had gradually become quite an ordeal. It involved me sitting Tyson up, removing his mask, helping him spit up whatever was too much to swallow, laying him back down so he could cough, and then sitting him back up. We literally did this for 1-2 hours on average for the past two weeks as Tyson’s throat and chest muscles weakened.  However, on Thursday, 1-2 hours turned into 4 hours. Mike arrived at 2 and we got Tyson up on PT table. He then attempted to do some exercises with him only to be stopped every two minutes by Tyson shaking his head and looking at us with a panicked face; he was clearly in respiratory distress.  We spent the entire session going back and forth trying to help Tyson with his breathing and swallowing.  That said, by 4:30 or so, Mike had to leave and we assured him we had it under control and Tyson would get over this hump in no time. 

By 5:15, my dad had left to pick up Abe and Cal at school. Tyson looked at me as I sat him up one more time to catch his breath and mouthed, “911” to me.  I said, “Tyson- are you sure?  The boys will be home any minute from school and once I call, that’ll be it.”  He nodded and repeated himself.  I texted his mom, Audrey <3 and told her what was going on. I think at that point, she said she would be making plans to come down as soon as possible. I placed the call to 911 and explained that my husband was in respiratory distress. They confirmed Tyson’s info and our address and said someone was on their way. Before we hung up, I said, “Can you please do me a favor?  Can you ask the driver to turn the siren off as they approach the house?  We have a little 4 year old and I don’t want to scare him.”  He said, “yes- I’ll make sure of that.”  So, I threw on a sweater and a pair of sneaks, grabbed a sweater for Tyson and got his bi-pap machine battery ready. I also grabbed 3 cans of his formula and a list of his current meds (like I don’t have that memorized already..).  My dad came home with the boys just as the ambulance arrived. He took them downstairs to play while I helped get Tyson out of the house and into the ambulance.  Once Tyson was set, I ran into the house and down the stairs to give Calvin a kiss goodbye and explain to him that I was taking daddy to the doctors. He said, “ok, mom!  I love you!”  And with that, I ran up the stairs,  (already fighting some tears, but told myself to get it together and focus…) grabbed my purse and hopped into the front seat of the ambulance. 

Tyson was hooked to his bi-pap as we rode to the hospital.  Pretty typical of anyone, particularly from the medical field, who sees Tyson, the EMT driver had a million questions about him because he is so young and so crippled.  She was very touched by the 2 minute re-cap I could offer and said she would be praying for us. <3 Once we arrived, they got him hooked up to the monitor that tracks his heart rate, blood pressure, oxygen levels, etc.  His levels were decent to start. The E.R. doctor came in and suggested putting Tyson on their bi-pap but we declined bc Tyson was comfortable with his.  The respiratory nurse/technician, Carolyn, came to meet with us. I explained Tyson’s condition, that we were scheduled for a tracheotomy on Wednesday and that he was extremely weak and hasn’t slept in days and as a result, he was having difficulty swallowing and breathing.  She and the doctor discussed giving Tyson a suction, which Tyson was happy about.  Just a few minutes later, all of Tyson’s stats dropped and he was in distress.  The doctor came in and was preparing to intubate right then but as they switched him quickly to their big. hospital bi-pap machine the levels returned to normal. Whoops. I suppose we should’ve listened to them in the first place.  Anyway, the next hour or so was all about getting the new mask comfortable for Tyson.  Carolyn told us she wanted to do the “big suction” for Tyson but everytime she removed the mask, his levels went crazy so she explained she would wait until they were more stable.  She used the yankhauer suction on him (which is like what you’d use at the dentist) and that helped a bit. In fact, she said I could help him with that when he needed it.  I knew she could see how actively involved I was with Tyson from the moment we got there. I wouldn’t sit down, recited all medications and doses to the nurse and spoke for Tyson when necessary.  I was polite, not a crazy person, but just my normal “voice” that likes to get our point across.  Carolyn was very sweet and took a liking to Tyson right away. “I have a feeling we are going to become buddies tonight!”, she joked with him. 

She went on to tell us they were preparing a room in ICU for Tyson and to sit tight, which was totally fine for us.  I texted Mike to let him know we were in the ER because he was just helping us for 2 hours at the house and he’s very involved in Tyson’s situation. He had arrived while we were hanging out waiting for the room.  Around 10pm, I looked at Tyson and saw his eyes kind of bug out a bit. I asked if he needed suction. He said “yes- and get Carolyn”. So I started to suction and had the nurse page her.  When she arrived, I told her he needed the big suction. She began to get things ready for that while I used the Yankhauer to get whatever I could out of the way.  What happened next, literally happened in about 30 seconds:  I looked at Tyson as he was shaking his head back and forth and mouthing, “I can’t breathe!”  I translated to Carolyn and asked her to please hurry. Very calmly, (as I suppose one should be as an ER doctor/nurse) she said “I’m almost ready…you’re okay Tyson”.   She asked him a question and he didn’t answer her. I just assumed he was annoyed at this point, so I repeated the question. He didn’t respond to me either. His eyes looked right through me. I said, “helloooo Tyson!” And clapped my hands in his face and even laughed nervously.  His head tipped to the side and he stared past me.  I spun around and said, “Mike! He’s not answering me!  Why isn’t he answering me?!”  Mike was in shock and just said, “I don’t know!”  The doctors rushed into the room as I was jumping up and down and trying to get Tyson to hear me by shaking his face.  I yelled, “he’s not responding!  Please help him!”  They said, “we are going to intubate, come with me” as they brought me and Mike next door to sit in a small office. 

I was obviously panicking and very shaken up but part of me felt calm bc I knew the intubation would bring him relief almost instantly.  Once Mike and I got to that room, I remember saying, “what the hell just happened?!”  He offered comfort by telling me Tyson would soon be fine with the intubation.  I emailed Dr. Shroff to tell her what was going on since she was there when this happened a year ago. She emailed back and said that they were all praying.  A few minutes later, the E.R. doctor came into the room with his head down and sat in the chair across from me. “I am very sorry to tell you this, but your husband’s heart has stopped. He’s gone into Cardiac Arrest.”  I just remember yelling, “WHAT?! Are you serious?…okay, so now what?  What does that mean?”  He said, “It doesn’t look good. I’m very sorry to have to tell you this.  The prognosis is not good.”  At that point, I begged and pleaded with him and said, “Please.  We have two little boys. Please keep trying!”  He looked at me and then at Mike and just shook his head and said he was sorry and that he would be back soon.  We heard the “coding” being paged and the sound of people running down the hall toward his room.  My entire body began to shake and all I could think about was- how am I ever going to explain this to Calvin?  What am I going to say to him?   I started to cry and the thoughts that entered my head were causing more and more pain.  I kept thinking, “but we aren’t finished yet!”. I texted Audrey who was about to leave her house to head to Greenwich and told her she needed to get the family and come down right away. I wrestled with telling her everything because she was 3 hours away and I didn’t want her to take that long drive with that kind of pain taking over.  I also wanted to give Tyson time to pull through.  The longer we sat there, the more anxious and frantic I became.  I wanted to jump out of my skin. Thirty-five minutes later, the doctor came back into the room.  He said, “I have slightly better news: we’ve got a heart beat.”  I said, “Oh, thank God!”  He continued, “Well, I need you to understand that the prognosis is still not good. I don’t think he will survive the night. At most, you probably have a few more hours with him.”  I can’t even remember what my response was, if any.  I was numb.  I called Tyson’s mom to fill her in.  She told me to hang in there and that she, Joe, Dontay, Caleb, and Nate were on their way. 

Two resident doctors came in to see me next. They explained what the immediate plan was for Tyson.  They said they needed to begin a hypothermia protocol on Tyson right away. This is done basically by injecting frigid saline into his body to lower his temp to around 92 degrees in order to preserve neurological function.  It’s similar to a medically induced coma, but no meds are really involved. Tyson’s heart stopped for 35 minutes and they explained that they wanted to limit any brain damage.  They also said that they weren’t certain what caused the cardiac arrest but thought what likely contributed to it were blood clots in his brain and lungs and “what would you like us to do if we find blood clots?”  I told them to do whatever necessary to keep him alive.  My body was definitely shaking by now but I kept thinking- Tyson’s got this. He’s so strong. I KNOW he doesn’t have blood clots.  And I just kept thinking about our boys. The other young resident doctor sat down and sort of interviewed me to get a history of the past 24 hours for Tyson.  

The head E.R. doctor came in again.  “Do you want to see him?”, he asked me.  I jumped up, practically shoving him to the side and ran down the hall to his room. There he was, flat on the table, the Bob Marley shirt that Calvin and I had tie-dyed for him was cut up the middle, he had multiple rectangular shapes burns on his chest from the paddles and his eyes were rolled back.  Nurses were hustling around the room preparing Tyson for transport to ICU.  I held his hand and kissed his forehead and said told him I was there and that he is so strong and to hang in there. I told him that the boys and I needed him and that we loved him so much. As I was talking, his eyes rolled forward a bit and then back again. The nurses said, “oh, his eyes are moving!” and smiled at me. I stayed as long as they allowed me, which was probably about two minutes in total and just held his hand and kept talking.  Mike and I were told to wait in that room again until security was able to escort us up to the ICU waiting room.  Our friend Gia arrived next and shortly after, the three of us were on our way upstairs. 

Once they began the hypothermia protocol, the doctor came out to the waiting room every 30 minutes or so to let me know he was still alive.  Around 1:15 a.m. (3 hrs after his cardiac arrest), the doctor came in and said, “I’ve been with your husband for the past two hours and I think he’s watching me and if he is, that means he’s waking up and we can stop the cooling protocol.” She said that she walked past him and felt his eyes on her and said, “Tyson- are you following me?” And then he blinked. Then she had him follow a pen as she moved it in front of his face and he was able to do that, too. She said, “hang on, Tyson. I’m going to get your wife.”  So then she said to me, “I want to bring you in there to see if he has a reaction to seeing you.”  When I went into the room, I saw Tyson lying there on the bed with his eyes open slightly. I came around to the left side of the bed where his head was facing, grabbed his hand and said, “Hi, honey.”  He immediately started blinking, his eyebrows went up and down and his lips started moving. The doctors and nurses collectively said, “wooow!”  I said, “Tyson. I’m here. Do you hear me?  You know I’m here with you?”  He blinked. I said, “do you understand what the doctors are telling you?  If you’re with us, you need to let me know and we can stop this.”  He blinked again. The doctors explained to me that his body was in shock and that he was given an enormous amount of epinephrine to jolt him back in the E.R., so his face may just be twitching. So I said to Tyson, “Okay, honey- if you’re here with us and can understand what I’m saying to you, give me two really good blinks.”  He looked right at me and blinked twice. The doctors and nurses were completely convinced at that point and stopped the cooling.  They added blankets on top of him to warm him back up. I held his hand.  Carolyn came into the room and gave me a big hug and then looked at me and said, “oh, honey- that was too close.”  She was part of the team that saved Tyson. I will never forget her. 

So this was amazing- he was conscious and waking up. The next thing that needed to be done immediately was a CT scan to check his brain and lungs for clots. In order to do this, they needed to inject a dye into his system which needed to go through his picc line (in his arm). Because the line was installed in India, the question was whether or not it was a Power Picc, bc apparently that’s the only kind that you can put the dye through. I had no idea (which is SO unlike me 😉) so I emailed Dr. Shroff. She got back to me right away and confirmed it was not, in fact, a Power Picc. So, they had to install a temporary line in his thigh.  They told me he would be back soon and for me to wait in his room. As they rushed him down the hall, they passed Tyson’s parents and brothers who had just arrived. 

His parents gave me a hug and I brought them up to speed about everything that had just happened.  By then, it was nearly 3 a.m.  I thanked Mike and Gia for staying with me and told them to go on home. I knew the worst was over. I am so, so thankful that I didn’t have to go through all of that alone.  I sat in a chair next to where Tyson’s bed would soon be wheeled back to, placed my head in my hands and cried.  And I continued to pray.  Tyson and I have been through a lot together but there has been nothing that compared to this. I cried out of exhaustion and slightly out of a sense of relief.  

Tyson was wheeled back into the room 45 minutes later. As we all stood at his bedside, we watched Tyson’s tired, bloodshot eyes open and close. He would make eye contact with me for a moment and then stare at the ceiling and then close his eyes altogether.  His ICU nurse told us that his scan results should be done soon and remarked on how well Tyson was doing.  While we waited, I held Tyson’s hand as he slept.  Finally, the scans came back and showed no blood clots in his lungs or his brain. What a relief that was to hear.  A couple hours later, around 6am, another doctor came in to tell me that Tyson was doing “amazingly well”.  His heart rate was still pretty high but everything else looked good.  For me, it was exhilarating to see the shock and amazement in the doctors and nurses faces. They were virtually speechless.  They said we weren’t out of the woods yet, but well on our way.  If he could make it through the weekend without incident, we would do the tracheotomy on Monday. 

Later that day, Friday, they brought Tyson in to replace the picc line in his arm so that it was more functional. This prevents Tyson from being pricked by needles every time they need bloodwork or to give IV meds. That procedure went beautifully.  While he was in the operating room, I sat just outside and waited. A cardiologist came and introduced himself to me and began to explain me that Tyson had likely sustained some damage to his heart and they would need to do an echo cardiogram next.  Yet another doctor telling me what to expect and that I should prepare myself… Those results came back and showed his heart was 70% efficient, operating very well and there was no reason for follow-up with the cardiologist. 

My husband is amazing.

The next couple of days following his cardiac arrest, he was only able to communicate through blinking. Soon, he was able to nod or gently shake his head.  He would move his lips to speak or whisper but because he was intubated and had 3 tubes in his mouth, it made it nearly impossible to understand him. They had to give him something for the pain and to help him sleep (Tyson suffered some broken ribs from the CPR).  Thankfully that weekend, Tyson slept through most of the day. I was extremely relieved and felt so at peace to see him sleep so soundly. He hadn’t slept that well in ages.  By Sunday, he was more awake.  Monday came and he was scheduled for his trach that evening.  Audrey and I met with the surgeon who to perform the procedure. He was so sweet and kind which really put me at ease about it all. Besides, after having seen all that I had a few days prior, I was welcoming the trach. Tyson was sick of the tubes and ready as well.  Anyway, the surgery went very well and I was SO, SO happy to see my handsome husband’s face again!!  He’s had that bi-pap mask on for about a year. 

In the midst of all of this, I was asked to meet with one of the Infectious Disease doctors who was one of many intrigued by Tyson’s case.  He had asked me to bring in all of Tyson’s medical records so he could investigate.  I had told everyone from the moment we arrived that he suffered from Chronic Neurological Lyme with ALS symptoms and that we were being treated successfully with stem cells.  This man proceeded to tell me that they would not be continuing his Lyme medication during his hospital stay because they did not feel he had Lyme, despite the 3 positive Lyme labs I showed him. Pardon me, but if Tyson were receiving medication for any other disease, would it have been questioned?  I highly doubt it.  He told me he didn’t like the lab they were drawn at, Igenex, and then said, “That lab is in California. There is no Lyme in California.”  Oh, the poor thing.  I couldn’t help but laugh and then said, “I’m not here to convince you about whether or not my husband has Lyme. We are going to address his breathing issues only and I’ll continue his Lyme treatment once we get home.  You’re not a part of our journey and that’s totally fine.”  I felt my face getting hot and kind of wanted to conduct a quick Lyme seminar for him but quickly realized I  hadn’t slept in two days and thought it best to leave it at that and politely excuse myself. 

Here is what’s going on currently:  Tyson is on a ventilator which means the machine is doing the breathing for him; inhale and exhale.  The object is obviously to wean from the ventilator which is done very gradually by doing something called cPap trials.  Controlled by the Respiratory team, Tyson tries breathing on his own with zero support for as long as he can tolerate. The first day they attempted this, Tyson failed. The next day, he did 5 minutes and the day after, he was goaled at 15 minutes and did 20. The other part of the trial is having Tyson on the cPap which offers a little support. He has to initiate the inhale and exhale but the machine helps and if Tyson ever feels too tired to breathe, it automatically kicks in for him. This is all very exhausting for Tyson; it’s truly a workout. But he’s doing great. He does a few hours a day now on the cPap :)  Like I said, this is very challenging and draining for him, but it’s crucial for the weaning process that he push himself, within a safe set of parameters. 

Additionally, Tyson cannot come straight home from the hospital when it’s time. For one, it’s not safe at the moment. I will be getting basic vent training at the hospital, but because this is all new to Tyson, his needs will fluctuate which means the settings of the machine will constantly need adjusting. Secondly, Tyson needs intense respiratory therapy.  Even if I found someone to come to the house to work with him an hour a day, it wouldn’t be enough for what he needs. The Respiratory team told us about an incredible place about an hour north of Greenwich named Gaylord Rehab Hospital ( that focuses on vent weaning. They have an incredible reputation for being one of the best respiratory facilities in this part of the country and Tyson and I are hopeful he will be accepted for treatment.  If he’s accepted and once a room becomes available, Greenwich Hospital will transport him there. He will stay at Greenwich until then, thankfully. 

The boys are great.  Cal knows I had to be with daddy all day and night and when I could, I would come home and do dinner/bath/books and put them both to bed and head back to the hospital.  I took Cal to see Tyson on Friday for 20 minutes before school. It was so good for both of them (and for me, too!). 

We are all doing well. We are truly taking one day at a time.  Thankfully, Tyson’s mom is here helping me take care of him. We are working in shifts. 

So much more to fill you in on soon. Thank you so much for your love and support. 


Sunday, February 15

Good evening friends and family:

This past Tuesday, Tyson and I met with our pulmonologist, Dr. Sachs in Stamford. We were hoping he could offer a small, temporary solution for Tyson’s breathing and swallowing troubles so that he could be comfortable and benefit more from his PT sessions. Because Tyson is so weak, he was forced to wear his bipap in the car and in the doctor’s office. I updated the doctor on Tyson’s condition (the last time he saw Tyson was in 2012 when he had the bilateral pulmonary emboli and we were about to go to India for the first time). I explained that this is a rapidly progressing disease that we are racing to keep up with and while he has been steadily declining for the past 4 years, there have been marks of significant improvement throughout the process, almost entirely due to the stem cells. He said that while he is ignorant to the subject of stem cells, he does not discount their potential. I explained that his muscles have grown so weak that it’s become increasingly difficult to breathe and swallow, which was totally apparent as we sat there in his office. His suggestion was not for a pill or a special inhaler like we had secretly hoped, but for an immediate tracheotomy. He said that Tyson was facing respiratory failure. As we sat listening to the doctor explain the procedure, I fought to hold back tears. I looked at my husband, struggling to breathe with a tear rolling down his cheek and I began to cry. The doctor spoke to us about some patients being adamant about not having a tracheotomy ever, even if it means saving or prolonging their life. He asked if we ever had this conversation and we said, “no, not really”. I think at some point, he asked if we wanted to go ahead with it (he was ready to admit Tyson that moment) but Tyson shook his head and said, “no.” Dr. Sachs said that we were taking a huge risk at this point by not having it done and just trying to get by on our own and if at some point Tyson became too weak to breathe, there would be nothing I could do. His objective was to put us in a position that eliminates risk and takes the danger out of play, so to speak.

I gave him Dr. Shroff’s contact info so they could discuss and we left his office. He asked us to think about it and let him know what we want to do.

Tyson and I spoke very briefly about this; we decided it wasn’t time to take this step, that we were happy to learn about the procedure in the event that we do need it someday and that we would continue pushing through the way things were. By Friday, Dr. Shroff emailed to let me know she and Dr. Sachs had spoken and that she wanted to talk to us. The following morning, (evening in India), she called. She told us that Dr. Sachs felt strongly about the procedure for Tyson and that she agreed. She said, “it’ll keep him safe and it is reversible!” She said, “you remember we almost lost Tyson a year ago, we cannot risk that again. This will actually help him get stronger. He will breathe better, his cells will get the oxygen they need, he will sleep better and should even be able to speak and eat again!” This made sense to me and I immediately felt at ease hearing it from her. I brought the phone into the bedroom and held it up to Tyson’s ear. She explained it all over again for him to hear and said to him, “Tyson, you’re a very strong person and you need to stay strong. This is just a phase! This is a phase and you need some help getting through it. Once you feel strong enough, come to India and we will begin the weaning process.” Tyson nodded and whispered “thank you”. Before we hung up, she gave me a small list of supplements and vitamins to get Tyson on and asked me to have Dr. Horowitz find as many “nerve growth factors” as possible to get him on as well. Ugh. This has felt like an enormous, crushing blow, but as Dr. Shroff said- don’t look at it as a step back, but instead, consider it as the thing we need in order to move forward.

So it’s settled. I will call Dr. Sachs in the morning to arrange the surgery. I know Tyson’s scared. I’m scared and my heart breaks for him. I pray that he sees this as a turning point for the better and that the good things we’ve been praying for to see will start appearing as a result. I’m worried/concerned, too with regards to Calvin. It’s bad enough he has to see his daddy like this, but can he handle one more scary thing? It beats the alternative, so we will make sure we talk it over with him so he’s comfortable. It all seems to resonate best with him when I put it in terms of superheroes…which obviously is the category his daddy falls under.

I’ll leave you tonight with a very hopeful story: I’ve mentioned in the past (or at least I think I have), about a German patient who suffered from Lyme/ALS and received stem cells at Nu-Tech just like Tyson. Her name is Christine and she is a remarkable woman whom I’ve had the pleasure of talking with on a few occasions. She is the woman who everyone at Nu-Tech said Tyson reminded them of because of the nature of their illness. I’ve reached out to Christine in the past for support when I was at a loss of words with Tyson. I reached out to her most recently about a week ago. I asked her if, at her worst, did she ever have difficulty breathing or swallowing. She said, “oh yes! And it got much worse before it got better and even then, that took a long, long time”. She asked what Lyme meds Tyson was on and I told her that he’s just on IV rocephin (which, by the way, is considered to be the most potent Lyme drug) and that he’s tried almost all other Lyme meds at one point or another. She said that her LLMD (Lyme literate doctor) in Germany, put her on an antibiotic protocol that she attributes, along with the stem cells, to her healing.

Um, so can I have that recipe?? :)

She gave me the names of the antibiotics and I passed that info onto Dr. Horowitz and his team and to our neurologist who said to definitely try it, as long as there are no side effects that are unmanageable for Tyson. There is a theory among some Lyme doctors and patients that by playing with the variable/combinations of antibiotics and medicine schedule, you are able to successfully kill more of the Lyme bacteria. I think that’s because after treating w the same medicine for so long, the spirochete become sort of intelligent and learn to evade it. So when you take a break from the meds, they creep back out…and then you hit them again with different meds and so on. Tyson feels good when he’s had the rocephin, so it stands to reason that perhaps there is more we can do to fight the lyme. I am so curious and hopeful that we can work with the German doctor and find something that’ll click for Tyson.

Christine told me to tell him to think positively and to stay strong…he WILL get better. You can’t beat that attitude. I ran into the bedroom to tell him about our conversation and his face light up.

If you didn’t know already, my husband is a fighter. We will get through this next step and he will continue his healing process. Thank you for your love, prayers, and good thoughts.


Saturday, February 7

Hello, friends and family:

**Prepare for a long read- I have honestly been working on this off and on for a few weeks. There just aren’t enough hours in the day to do everything I would like. Keeping you all informed is certainly a priority, as I know many of you wonder how Tyson is doing every day. Thank you for your patience as I work to get this to you:**

Happy New Year to you all! It has been quite a while since I’ve given a proper update on Tyson. Let me start by rewinding a bit to September:

The start of 2014 brought us to an incredibly devastating state of Tyson’s illness. By the grace of God, the healing hands of Dr. Shroff and Tyson’s own unbelievable strength, we avoided the ultimate tragedy. So, this year has been about recovering from a near-death state and maintaining a stable condition. The nice thing is, he always feels good when he’s in India. The trouble in the past has been when he comes home, he declines a bit as a result of numerous factors. Our first order of business was to determine what steps we needed to take or changes that needed to be made in order to avoid any decline in his health.

First, he needs Physical Therapy as much as possible. This does not coincide with what our insurance deems necessary for his case; the most they’ll offer is 3 days/ week (criminal, no?). So, in the past, I’ve spent an inordinate amount of time fighting with our insurance to try to get more help for Tyson all the while, he’s weakening. In addition, we struggled quite a bit to even get him to these measly 3 appointments at Burke because of the weather and the increasing level of difficulty involved in transporting Tyson (which of course sent me down a dead-end road of pursuing a transport service that would, in theory, pick him up at home and drop him off). The other piece of the puzzle is that Tyson now requires assistance while I am at work. We lasted as long as we possibly could without any help, but with Tyson’s recent struggles, we realized this couldn’t be avoided any longer.

So first, we set out to find a physical therapist who could come to the house for the sessions. I did a search online and found a company in Old Greenwich called Elite Health Services that looked pretty impressive. They worked with professional athletes and everything on their website seemed very thorough. I gave them a call on August 30th. I briefly explained our situation and the receptionist was able to connect me right away with the director of PT. His name is Mike and I got a great vibe from him straight away from our phone conversation; he seemed energetic and enthusiastic. As I began to tell our story, a part of me was admittedly nervous for what he might think. Sadly, Chronic Lyme disease within the medical community is often viewed as a mythical diagnosis and completely disregarded and on top of that, Tyson was receiving experimental stem cell therapy. I was afraid that Mike might take one look at Tyson and tell us he couldn’t help him. The other part of me didn’t care. I don’t care if people don’t believe or understand what Lyme disease can do. But the bottom line is: we need someone to help us.

Mike came to the house to meet Tyson and myself that following Wednesday. We thoroughly delved into Tyson’s medical history and Mike didn’t flinch. We could tell he was as eager to get started as we were. Tyson and Mike discussed short term and long term goals and I couldn’t help but point out the photograph on our wall of Tyson dunking during a high school basketball game and said, “we want this. Can u get him here again?” We all laughed a bit :) (I need to add a little levity when we’re discussing such a heavy subject).

Our first session was September 5th (our 5 year anniversary :) ). And not only is Mike incredibly energetic, he is also extremely knowledgable. He has some background in respiratory therapy which is rare for PT’s and lucky for us! Right away, he noticed that he could feel Tyson’s muscles contract when doing leg extensions with him and so forth. In the coming weeks, he began a regimen of leg and shoulder exercises as well as shoulder, neck and breathing/lung work. Tyson felt better almost immediately and after the first day, we knew that this was the missing piece of the puzzle.

Through Mike, we were able to find this wonderful home health care company called Privatus that introduced us to Doug, Tyson’s aide. Doug is so great. He’s smart, patient, and truly cares about Tyson. It takes a LOT to get Tyson comfortable; he is literally trapped in his own body so when he wants his foot moved an eighth of an inch or his hips moved or his masked taken off and put back on 10 times in a row, it can be very frustrating for the caregiver. But like myself, Doug understands that regardless of how “annoying” it may be for us to try to meet Tyson’s demands/requests, it’s a million more times difficult for Tyson to be in the position he’s in. Doug does everything to make Tyson comfortable and that makes me happier beyond words.

Quick interjection with this story of our doctor’s visit: We met with Dr. Katz, our neurologist, at the end of September. We hadn’t seen him in several months and he admitted he was nervous/anxious to see Tyson after hearing briefly about what happened this spring. As we entered his office, his face lit up! He was so happy with Tyson’s appearance, despite his voice being at a whisper. He said it seemed as though something had shifted; almost as though he had turned a corner and was making a trek towards recovery. Regarding the sparks of improvement Tyson experiences…he said “once you begin to see improvement, there is no limit to what can be accomplished”. Like I said before, if it were truly ALS, there would be no improvement. None. So while the improvements may seem minor, they’re in fact extremely significant. I brought with us a letter from Mike describing his progress and projection plan with Tyson; Dr. Katz was thoroughly impressed. Tyson and I felt good. We’ve actually never left a neurologist’s office with a smile.

The therapy sessions continued Monday thru Friday for the next several weeks with Tyson experiencing little to no decline. I would definitely describe this trip home as “productive”. He returned to India just before Halloween for a 6 week stay. His time in India was also very productive. He received stem cell injections throughout the day and had several procedures over the course of the 6 weeks. We weren’t able to talk much largely due to the time difference ( 10 1/2 hrs) and because he spent a significant portion of his day in bed resting. We texted daily and I spoke with his mom often, which was really great. I know I’ve said this before, probably a million times, but it’s tough being away from him for so long. However, knowing he was with his mom and best friend and with our family at Nu-Tech, put me at ease.

Here he is in his room at the clinic:


Tyson saw improvements in his core and neck muscles. What frustrated him greatly was that his breathing and swallowing had not improved during this trip as we had hoped. What I pointed out to him was that we had only begun to receive stem cell injections in his chest in the past year while the rest of his body has been receiving them since Day 1; they just need time to catch up. And the fact that we are seeing ANYTHING improve is reason to remain positive and hopeful.

The day Tyson came home in December, it was easy to see how much he was struggling. This trip had been rough for him. The flight was delayed several hours which meant that from the time he left the hospital to the time he finally was seated on the plane was approximately 7-8 hours. The most he had been in his chair was only a couple hours on average and then he would need to rest his body and give his lungs a break by putting his bi-pap mask on. So, this extended period of time was completely overwhelming for his body. He was hooked up to the mask for the car ride from the airport to our house and almost immediately I put him to bed for more rest. I scheduled Mike to resume PT session on Monday which would give us the long weekend to recover. The first day, he did not get out of bed. I didn’t really think much of it considering how brutal his trip had been. Over the next few days, he stayed in bed. I was able to get him up and in his chair on Saturday and Sunday for 20 mins each day. He just couldn’t breathe without his mask and the swallowing was equally challenging for him. His saliva had become too much to swallow, and when this happens, he is forced to spit into a towel. I’m sorry for the details- I want you to know what he’s going through and it just is what it is right now and to be honest, I’ll probably never fully share all that we go through, for your sake. Anyway, by Monday, he still wasn’t able to leave bed, so Mike did PT while Tyson laid in bed. This is how the rest of that week went…and the following week. We all thought he would recover from his jet-lag after one week (I mean, let’s face it, a 15 hr flight home from India is difficult for anyone) but we were reminded once again that the reality is- it simply takes longer for him to recover than it does for you or me. After about 3 wks of doing PT in the bed, Mike contacted me for help with Tyson. He expressed his concern with him not getting out of bed and said that in order for Tyson to make any improvement, it was mandatory that he do his PT sessions on the physio table or at least from his wheelchair so that Mike could work with his hips and shoulders. I told him I was certain that Tyson was experiencing some fear and anxiety regarding the breathing and that I would be present at the next few sessions in order to help him get over the hump.

And that’s precisely what happened next. At the first few sessions, Tyson even had me sit directly in front of him while he was on his side to help calm him, just to give you an idea of just how scary it is for him to struggle with his breathing. As usual, Tyson proved to be stronger than he gave himself credit for and is doing well with PT. With the help of our friends at Burke, we’ve found a speech therapist who focuses on “breath support” and will come here on Tuesday for a consult and hopefully begin working with Tyson as much as possible. She will help him learn to breath and swallow more effectively and also strengthen his lungs and mouth muscles (put those stem cells to work!). We look forward to meeting her!

So, as with many Lyme patients, Tyson experiences good and bad days. The bad days are extremely difficult; struggling for every breath, barely able to swallow, hardly any energy to even sit up, and an overwhelming sense of despair and defeat. All he wants is to be able to hold his kids and play with them. He apologizes to me for not being able to help with the boys, apologizes to Cal for having to see his daddy like this…it’s overwhelming. In fact, like I said, I will probably never fully share the details of our toughest days but the good news is, we have good days and we are intent on having more. I check in with Tyson frequently about maintaining a positive mindset and ask him what he visualizes…he said he pictures himself playing golf and stepping on the clutch in his old car. He smiles when we talk about these things. Also, Tyson and I have a nightly routine of watching “Breaking Bad” together which is so great…it gives us a sense of normalcy and reminds us of our former life together. :)

We begin and end each day by thinking of all of the wonderful things we are grateful for. We have so much. And so, I’ll wrap this up by thanking all of you for your endless support and prayers and positive vibes. Thank you for the dinners, the groceries, the company, the texts, the calls, the messages to make us smile, taking Cal for play dates, shoveling me out of the driveway, lending an ear or a shoulder, your patience and understanding and for the many donations to the TysonFowlerFund. You have no idea how this all lifts us up and keeps us moving. And finally, thank you to Mike and Doug and our doctors who stand with us in this fight.

I have more I am working on and will update again as soon as things materialize.

Much love,

Annie and Tyson <3

P.S.- leaving you with some sweet pics :)



Thursday, December 11

Hello friends & family!

Tyson, his mom and his friend Matt have safely landed in Newark, NJ and are almost to our house! Calvin, Abren and I are anxiously waiting for them with coffee and muffins on hand, as I am sure Audrey and Matt could use some comfort foods :)

I will send you all an update on Tyson’s current condition and details about his trip as soon as I can. Overall, he has remained stable which is an enormous accomplishment and has even made some small improvements. The important thing to remember is although the gains may seem small, there are much greater gains being made under the surface throughout his body; it’ll just take some time to see them!

Thank you all for keeping us in your prayers.

With love,
Ann and the boys :)

Wednesday, October 29

Hello friend and family-

After about a 10 1/2 week hiatus from the blog, I am writing tonight to let you know that Tyson is on the plane en route to India at this moment with his mom and his best friend, Matt. This will be Tyson’s 6th trip for stem cell treatment!! He is so excited to head back to Nu-Tech and is anxious to make some more progress in his recovery.

I will write more later on, but for now, know that this has been an overall successful stay at home for Tyson. He is at his weakest (with the obvious exception of the trip back in the spring that landed him in the hospital); his voice is at a whisper and he is extremely tired. Once he resumes his stem cell therapy, he will begin to feel better!

Thank you to everyone who keeps us in their thoughts and prayers.

More to come…!

With love,

Thursday, August 14

Hello friends & family:

My message is brief tonight. I am writing to say that Tyson and his parents are all home safely from India. They arrived here in Greenwich around 6:45 this morning. The boys and I greeted Tyson outside as the car pulled up to the front of the house. I got tears in my eyes as I watched Tyson be reunited with Cal and Abren. He couldn’t stop talking about how much they’ve both grown while he was away.

Tyson is exhausted from a grueling trip and has been in bed resting all day. He’s happy to be home for sure. I have plenty to update you all on and will do so very soon. However, the reality right now is that we are both feeling exhausted physically, mentally and emotionally. I look at him and my heart breaks. He’s fighting so hard, has been through hell these past 3 1/2 years and he’s tired. Please don’t get me wrong- no one’s giving up over here; it’s just overwhelming sometimes. The important thing is that we keep moving and stay focused.

Tomorrow is a new day. As always, thank you for keeping us in your thoughts and prayers.