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 (www.gaylord.org) 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.