February 17, 2017

Hello friends and family.  This Sunday, February 19th marks the two year anniversary of Tyson’s cardiac arrest.  It has been a stressful two years but we are grateful for where we are today.  I suppose I’m not getting any better at keeping up with this blog.  I swear I’ll work on it.  I’m sure many of you would agree that we could sometimes use a few more hours in the day to get things done.  For that, I do apologize because I know that so many of you think of Tyson every single day and pray for him and wonder how he’s doing.  So, before I get into a recap of the past few months, please know that Tyson is okay.  He is stable and still fighting.  We have been through some ups and downs and learned some hard truths along the way, but we are still moving forward.

We left off in June.  Calvin’s pre-school graduation was scheduled for June 23rd at the school.  I was prepared to hire a nurse to come stay with Tyson so that I could attend graduation but decided I’d ask our angel of a daycare director, Dorothy,  if she and the other families would be open to US hosting graduation at our home so that Tyson could be there.  The funny thing is, Dorothy and I were both thinking the same thought and brought it up to each other a week before graduation.  I was so relieved because we sincerely do not want to make crazy requests for special treatment but this was just another example of how our friends support us and help us create special moments for Tyson and the boys.  And as it turned out, the day was beautiful, the backyard accommodated all of the families wonderfully, and there were smiles all around!  We are so proud of Calvin and so grateful to Dorothy and her amazing staff of teachers and the incredible parents and families who so lovingly and graciously obliged. ❤

 

A few days after graduation, I scheduled an appointment to have Tyson’s peg/feeding tube replaced.  We have his trach changed in the bedroom because it’s a pretty simple procedure and he’s had it changed out a few times in the past, so there are no surprises.  This, however, needed to be done at the doctor’s office just in case we ran into trouble (and by that, I mean, in case it was difficult to remove or if he bled too much).  Tyson got this tube installed in April 2014 in India and we were told they typically last 6-9 months before needing a replacement.  However, we were also told that if it wasn’t bothering Tyson or defective, we could just let it be.  It had started to wear out and we knew it was time for a replacement.  Our gastroenterologist is so incredibly nice and let us come in right away.  This was our first time out of the house and on a “trip” since he came home from the hospital so we were both a little nervous.  I hired an ambulette and the entire transportation process went pretty smoothly.  Seemingly “little” things like this take a lot out of Tyson.  It’s stressful and scary for him because transferring him like this is obviously an elaborate process that requires a great attention to detail, handling all of his tubes, physically getting him into the van, holding him steady as we drive down the road, etc., but he trusts me to make sure everything goes well and we get through it together.  Whenever I see his nerves creeping in, I hold his shoulders and look at him and smile and say, “We got this, ok?”  He nods 🙂  The doctor’s office is less than a mile from the house, thankfully.  The removal and replacement of the tube took seconds and before we knew it, we were back home.

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We had a phone consult with Dr. Horowitz in the beginning of July where we discussed trying a new protocol to treat the persistent Lyme bacteria.  To help you have a better understanding of what’s going on in his body, the Lyme bacteria, over time, can create sticky biofilms that surround the bacteria, thus making it impenetrable to antibiotics.  There are some medications and supplements, however, that have the ability to break through these biofilms and directly attack the bacteria.  Additionally, the Lyme bacteria can develop into a cystic form, which again, would make it nearly impossible to treat with regular antibiotics.  This is why Tyson and so many others have been suffering for years with this disease.  And again, not every protocol works the same for each patient so it’s important to experiment and find what combination of medications and supplements  work.  The protocol Dr. Horowitz designed consisted of two new medications plus the IV rocephen he’s been on and off for the past few years.  We were to “pulse” them, which meant that Tyson wouldn’t take the meds every single day.  Rather, he would take them Mon/Weds/Sat.  I believe the theory behind this approach is to trick the bacteria to come out of hiding and then zap it with the antibiotics.  With this combination, Tyson noticed an improvement in his overall strength right away.  After about 6 weeks on the protocol, as I hoyered him into his chair one afternoon, I stopped and looked at him as he was trying to get my attention.  He wanted to show me this:

Now, part of the reason he was able to do this movement so well was because of his positioning in the hoyer (he is propped upright).  But it is evident that he is moving a lot and obviously initiating everything.  We were very excited to see that this combination of meds was working nicely for him.  However, two of the three meds made him very sick.  This is the typical trade-off and sometimes the reaction seems worse than the actual symptoms and it becomes difficult to move forward with them.  Despite that, Tyson wanted to press on but we heeded Dr. Horowitz’s advice and began giving two week breaks in between to let his body recover.  I am fairly certain that Tyson was experiencing a Herxheimer Reaction, which in the most basic terms is described as bacteria that is attacked by antibiotics and dies off, releasing endotoxins into the blood and tissue faster than the body can handle it.  This creates an inflammatory response with a myriad of symptoms.  In Tyson’s case, these symptoms ranged from intense sweating, nausea, insomnia, fever, chills, upset stomach, and headaches.  This has happened to him before and while it is borderline terrifying to endure or witness, it can serve as an indicator that the antibiotics are working and that the bacteria is dying off.

When I lost my job in June, we lost Tyson’s physical therapy along with it.  Without getting into too much detail, I’ll just say that by law we are required to use Medicare approved services first (before our COBRA insurance kicks in) and the short list of Medicare approved in-home physical therapists in our area informed our doctors that they cannot see Tyson until he declines “enough” or unless he’s just been hospitalized.  And the laws of Medicare are so specific and unwavering, that if they did grant Tyson visits, it would only be the 60 maximum.  Tyson clearly needs more than that.  To say that this is frustrating and unfair is an enormous understatement.  Our lawyer with the State of CT and I worked tirelessly (with the help of one of Tyson’s former nurses who has the biggest heart!!) to write an appeal to our insurance company in the months leading up to the lay-off requesting that they grant Tyson visits from our physical therapist.  With our appeal, we successfully proved that this was a) the only PT group in the area that could handle Tyson’s complex needs, b) this on-going physical therapy is entirely of medical necessity, and c) that he is *improving* with this therapy.  But that battle is moot now that Medicare is our primary insurance.  With the help of our lawyer for the state, we are still investigating loopholes and appeals but I’ve been doing this long enough to know that appeals generally take a very long time and that is just something we don’t have, plus it’s extremely important that we focus our energy constructively and where it’s needed the most.  So, rather than getting upset and frustrated, Tyson and I decided that I could pick up where we left off with the therapy until we got some help.  I have been very active in his PT sessions from the beginning, helping with many of the moves and learning how to facilitate and so on, so we agreed that doing basic range of motion exercises would be better than nothing.  I’d put on a little Tribe Called Quest and we’d get to work. 🙂   Additionally, we made sure Tyson got into his chair 4-5 times per week which is extremely beneficial for his entire body.  Sitting up helps strengthen his core, it opens his diaphragm which helps his breathing, and he uses his neck and facial muscles more to look around the room.  I swear, half of this battle is learning to pick ourselves up and dust ourselves off when we’re faced with obstacles and setbacks.

So that’s how we spent most of our days over the summer and into the fall.  We had some pretty special family moments peppered in throughout.  Our friends at RL hosted a small fundraiser for Tyson at the Greenwich Social Club at the end of July.  It was SO lovely!  Tyson was extremely happy, as he had the chance to see many of his friends and former co-workers.  They all gave him hugs and joked with him (and even offered him a beer 😉 ).  It was great to get out for a couple of hours and feel so much love and support.  ❤  The monies raised during this event helped us pay off our balance with the physical therapy group!

Calvin started Kindergarten in September!  He really enjoys going to school, he loves his teacher and all of his new friends.  We read together just about every night and now he is even reading to me!  He continues to draw pictures of his family (and skateboards, ninjas, and basketball, too!).

 

Halloween was a lot of fun for the boys, too.  Calvin wanted to be Michael Jackson and Abren was going to be a race car but at the last minute, refused to put the costume on. So I found an old St. Louis Cardinals warm-up suit and threw that on him and called him “coach”.  Once I put his Jordan’s on him, he actually looked more like a break dancer which was more fitting for him anyway 🙂 Tyson and I got a lot of laughs out of these costumes, and yes, we combined the “Thriller” and the “Billie Jean” looks for Cal’s costume 😉

 

I suppose I talk about the boys an awful lot but in a lot of ways, I think it’s just as important to share their story along with Tyson’s.  As much as I try to shelter them, they are absolutely affected by Tyson’s illness.  These two amazing little guys love their dad SO much and it’s so beautiful to witness.  Calvin is pretty stoic and doesn’t always talk about Tyson and I know that it’s very painful for him to see his dad like this.  Like me, he has moments when he breaks down and cries because he misses Tyson so much.  He asks me all the time “when are we going to hear daddy’s voice again?”.  This Christmas, he wrote a letter to Santa that read, “Dear Santa, I don’t want toys for Christmas.  I just want my dad to be better.  Love, Calvin”.  This sort of thing kills me.  It is unbelievably heartbreaking.  I tell him that daddy’s working hard and that our job is to love him, encourage him, and cheer him on.  We talk about what it means to be grateful and he understands what that means.  It doesn’t necessarily make things easier, but it helps.  Abren is two and a half and honestly doesn’t know any better, as I’ve mentioned in the past.  He is SO funny with Tyson.  He has his little routines with him.  For example, after bath time, he insists that I bring him to see Tyson before getting his pajamas on.  I don’t know why!  He MUST see him and say “hi daddy” before getting ready for bed.  He also started calling Tyson “Cookie”… Don’t even ask- I have no idea where he got that from but we die laughing every time!  Every so often, he’ll run into Tyson’s room and put a toy car on his arm or his leg and just leave the room.

I could give you a list a mile long of all of the ways this disease has hurt us.  But we know that if we head down that road, it’ll be counter-productive.  So, if that starts, we quickly try to correct it.  We know the immense value in appreciating all of the things we HAVE and making that work to our advantage.  We know that this is somehow making us stronger and anything that detracts from our vision is no good.  Calvin’s kindergarten teacher told me during our parent/teacher conference that if I had not told her about Tyson’s illness, she never would have known.  I think that speaks to how well Calvin is handling this.  The boys are growing up to be very loving, sensitive, and compassionate individuals with a real sense of what matters most.  Don’t get me wrong, there are times that Cal struggles and his frustrations overflow but we talk it through together and keep moving forward. I believe that this moment in our lives is showing them what love is. The boys watch me care for their daddy and want to get involved and help me out.  They’ll check in on him and say “daddy, are you okay?” and Tyson smiles.  Calvin is my right-hand man and helps me so much, whether it’s running to get his little brother a juice box because I’m busy with Tyson or helping me get medical supplies from the guest room.  Our friends and family continually show them what you do for people in need and in the name of love.  And I think that’s a wonderful thing.

Here are some beautiful photos of the boys playing with Tyson and one of them helping me with his physical therapy.

 

Shortly after Thanksgiving, Tyson developed a small pressure sore which has made everything come to a screeching halt while we treat it and let it heal.  Despite how often we were moving him and changing his positions, it seems that this was somehow unavoidable.  He’s had one before and it took almost four months to heal.  This time around, Tyson has opted to stay in bed lying flat on his back versus in sitting position in his bed or chair which would add pressure and slow down or stop the healing process completely.  This has caused Tyson to lose some strength because he’s obviously moving less (we had to stop doing leg exercises for the time being).  Let’s be honest, if any of us laid flat for several weeks with minimal movement, we’d be pretty tired, too.  The key is to manage the wound care effectively so that it does not become infected, as that would mean an immediate trip to the hospital.  One of our doctors came to the house to teach me how to do wound care dressings (yikes!) and he’s continued to help coach me through these past several weeks to make sure it’s healing properly.  Everything we do is in an effort to keep Tyson out of the hospital.  This is no different.

This winter has been particularly brutal for Tyson because, as I said, his progress was put on pause.  He’s been virtually immobile, lying in bed listening to music or the television.  The kids and I have tried our best to make him laugh and smile but haven’t always been successful at it.  Tyson has experienced some highs and some heart-wrenching lows, even to the point where I wondered how much more he can take.  How many times can he bounce back and how much more can his strength be tested?  I wonder how the two of us are still functioning at all.  I know how tired he is and I see fear rearing its’ ugly head for both of us every once in a while but here’s the thing–we work on squashing that fear and replacing it with faith.  We remind ourselves about how lucky we are that he’s alive. We know that our gratitude must always be greater than our fear.  We are trying to survive an extremely scary and stressful situation every single day and because of that, it is paramount that we keep a positive vibe and energy in our house. We continue to talk about all of the good things we’ve done together in the past that I know will make him chuckle.  We talk about what we want to do when we’re done with “this”.  I tell him he’s in charge of cooking.  😉 I am CONSTANTLY reminding him of how incredibly strong he is.  Here is a man whose heart stopped for thirty-five minutes and when he was somehow miraculously revived, was given just two hours to live…and he’s fighting like Rocky to beat this.  He was fighting when he wasn’t even conscious.

As for me, I am doing okay.  Keeping all of the working parts together for Tyson and our family is a constant challenge.  My biggest job is obviously making sure Tyson stays healthy and stable and that he doesn’t get sick (the flu or a bad cold could develop into pneumonia and send him into the hospital).  Mostly, I just miss Tyson SO MUCH even though he’s only in the other room.  Not having him by my side to build toys or bake Christmas cookies with the kids is very painful.  Not being able to talk to him is painful.  Sure, we can communicate in our own way, he mouths words very well and I am really good at reading his lips and understanding what he needs, but I miss his voice.  He is very loving and sweet towards me, just as he has been from the beginning.  One day this Fall, I wasn’t feeling well and he mouthed the words, “are you okay?” I know that he wants to be the one caring for the rest of us and I assure him, his time will come 😉 I am physically and emotionally exhausted but I continue to be inspired by Tyson’s strength and determination and that helps me put one foot in front of the other.  I am trying to force myself to make time for things like yoga and pilates that will help relieve stress and make me stronger.  I have started my own business which has allowed me to be able to work from home and on my own terms.  Being by his side as his wife and caretaker when he needs me the most is something that is so invaluable.  It is also very rewarding and empowering to be able to help my family in so many ways and to sort of get back to my “roots” in business.  I work with an incredible group of women who are so supportive and inspiring and for that, I am endlessly grateful.

So, in December, Tyson received a few generous donations which have afforded us the opportunity to reinstate his physical therapy!  In order to make this last, we have cut back to two days a week for an hour per session.  We are so happy to have Mike back in the picture!  We started just after the new year and it was evident right away to him that Tyson had weakened quite a bit.  However, he noticed that he STILL had muscle contractions all throughout his body.  The contractions were weak but at least they existed. While we wait for the pressure sore to heal, Mike has been limited to what he’s been able to work on with Tyson, but there is much to be done with his arms, neck, core, and facial muscles, which have all slightly weakened, in particular his eyes and lips. What’s incredible and significant to point out is that Tyson CONTINUES to bounce back.  After just 3 visits, Mike noticed an improvement and we are building on that.   The words his neurologist once spoke always stay with us, “once you see any sign of improvement, there’s no limit to what you can achieve”.

We have a couple of exciting treatment prospects on the horizon.  After consulting with Dr. Shroff in India and Dr. Horowitz here, we are going to embark on a four week trial of a medication that has been used in the pre-trial phase to treat his ALS symptoms, in particular, to prevent further motor neuron death.  In the study, the subjects were even showing an improvement in motor function.  The drug has very minimal side effects and in Tyson’s critical state, we have nothing to lose by trying it.  Additionally, Tyson’s doctors and I have been working diligently for the past year and half on getting FDA approval for another treatment that we know will be life-saving for him.  So please, please say a prayer that this gets approved soon so that Tyson can have the support that he needs to continue his miraculous recovery.

Here is what I know: Tyson is determined to recover, just like he’s always been.  However, he needs a LOT of help right now.  In order for him to have a chance at recovery, it is imperative that he be able to continue with this treatment plan that is based primarily around consistent in-home physical therapy.  Even after six years of dealing with this devastating disease, it is still difficult for us to ask for help.  We are enormously grateful for all of the generous support we have received from Day 1 and we know that it is because of your help we have made it this far.  With that said, I am excited to share with you a fundraising challenge we are launching that is very special to Tyson!  Anyone who knows Tyson understands that there are certain things he’s very passionate about: his family, his friends, golf, and SNEAKERS.  He has always loved sneakers and what I’ve noticed over the years is that when people come to see him, they show him their sneakers, almost as if they’re seeking an approval from him 🙂  It is so sweet.  So the name of this fundraising challenge is called #showtysonyourkicks and much like the ALS Ice Bucket Challenge, you are invited to snap a photo of your sneakers, share on Facebook, Instagram, or Twitter and use the hashtag #showtysonyourkicks  and/or make a small donation of $25 to his fundraiser!  We will share every single picture with Tyson and I can tell you, he’s already smiling at the thought of it!  The monies raised will go directly towards his physical therapy sessions which will help FUEL his recovery!  Oh, and just because Tyson’s kicks of choice are his SNEAKERS (and an occasional wing-tip 😉 ), doesn’t limit you to just posting sneakers…stilettos, golf cleats, and biker boots will work just fine, too!

We cannot thank you enough for your continued support, your prayers, and your love.  All of this truly lifts Tyson, me, and the boys up so much.

XO,

Ann & Tyson

 

 

 

4 thoughts on “February 17, 2017

  1. Reading this story is so emotional. To see the strength Tyson has to push through this is unbelievable. In addition to you being by his side Day and night. Until someone gets sick do we really know the loyalty of those around us and strength we have inside us. Thank you from a fellow lymie for continuing to share your story.

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