October 2, 2017

Hello all โค   I want to start by expressing our enormous sense of gratitude to all of our friends and family who continually support us through fundraising efforts, texts, calls, visits, and by sending prayers our way.  Please know that your love has an incredible and lasting impact on Tyson, myself, and our boys.  The past few months have been rather uneventful, which, when you’re dealing with a critical illness such as the one Tyson is dealing with (with grace), “uneventful” is a pretty good thing.

Thanks to the incredible fundraising efforts over the past few months, Tyson has been able to have his in-home physical therapy two days a week.  We have slowed down as of recently but hope to pick it up again soon.  Tyson spent a large portion of the summer months continuing to heal from his Stage 4 pressure sore which meant he was on pretty strict bed rest.  Mike, our PT, and I would still manage to sit him up each session, which again, is so good for Tyson’s core muscles, his diaphragm, legs, neck muscles, and facial muscles.  Mike and I always comment about how GOOD Tyson looks when we sit him up.  He actually looks healthier when he’s up which is a contrast to what should technically happen when a patient who is lying down almost exclusively sits or stands up.  Typically, the patient would have a drop in blood pressure and maybe lose a little color but Tyson is so steady and healthy looking which is exciting and encouraging for us to see.  Mike commented, too this summer that Tyson’s muscle strength is the same overall as it was when we first got home from his six week hospital stay after his cardiac arrest in April 2015.  Not seeing a decline in that huge span of time is again, a very positive thing.  Also looking back to the start of this latest chapter since his cardiac arrest, our respiratory therapist, Guy noticed after doing a thorough review of Tyson’s ventilator numbers, (which essentially show how much effort he’s making to inhale and exhale and how much support is coming from the ventilator), that there has been virtually NO fluctuation whatsoever.  Ordinarily for a patient with a set of symptoms similar to Tyson’s, there would be an apparent decline in effort from the patient.  There are many times throughout the day that Tyson is breathing “over” the ventilator.  On top of this, hospital re-admissions are very common with patients like Tyson because with a weakened immune system, they’re more susceptible to infections and respiratory issues like pneumonia.  We are so grateful that we’ve managed to keep him home safely this long.  He is stronger than he knows ๐Ÿ˜‰  It’s very important to know that it is because he has been afforded the opportunity to have on-going physical therapy, that this is all possible.  Staying active and continually working on all of his muscle groups is what’s helping to keep him in stable condition, so THANK YOU to everyone who has helped make this happen for him!

Last month, Mike and I started hoyering Tyson out of bed and into his wheelchair during each session because his sore is nearly healed.  Tyson was able to sit comfortably for about 20-25 minutes and then we would return him back to his bed.  This is progress.  Now, even with these little moments of progress, he does have days where he is extremely tired and weak.  Some days, it seems no matter how hard we try, communicating is difficult for the two of us.  For the most part, he mouths words to me and I can generally pick up on what he’s saying.  For the words in between, we rely on the letter chart that we’ve both memorized.  Sometimes even spelling a small word takes five minutes because I can’t figure out which letter he’s trying to tell me because his mouth is hardly moving.  Other days, it’ll be noticeably improved and I’ll let him know!  Like everyone else, we try to collect as many of the “good” days as we can and keep moving!


About the boys: We started summer by celebrating Abren’s third birthday and Calvin’s Kindergarten graduation together at the end of June.  Calvin then spent three weeks at my parent’s in Upstate NY.  He learned how to fish with my dad, rode his bike, worked in the garden with my mom, watched movies, and probably had a few ice cream cones in between.  He also kept up with his reading (which he loves so much) to prep for 1st grade.  He was also on a baseball team again this summer.  He said to me at the start of the season, “Mom, I think I want to try to hit both ways when I’m at bat.”  I said, “Go for it!  Next practice, we’ll tell your coach you want to switch it up!”  He told his coach and sure enough, the kid can hit line drives from either side of the plate!  He certainly inherited our athletic genes ๐Ÿ˜‰  And thankfully with the help of a nurse, I was able to attend most games and practices and when I couldn’t be there, our friends jumped in to help.  We are grateful for them and that Calvin is strong and understanding.  Little Abie had a blast this summer going to the beach and the playground with his friends from daycare.  He and I went for walks around the block every afternoon.  Sometimes I’d pull him in his wagon but MOST of the time he rode his little red car as I walked beside him.  I try like hell to make life as normal and as happy as I can for these two little boys.  Cal continues to talk about his dad and most conversations are upbeat, describing plans he has for the two of them when he gets better.  He says he wants to dunk on Tyson and show him his breakdancing moves. โค  Abren is just recently starting to talk about Tyson and it’s funny because he is very frank and matter of fact about it.  He’ll say things to me like, “Daddy can’t talk.”  I chuckle and say, “You’re right, Abie, but he will someday soon!” and smile at him.  Abren is obsessed with cars and talks about Tyson’s little ’87 BMW and will often say, “Daddy is going to take me for a ride in his silver car!”.  I think the little guy can see into the future, don’t you ๐Ÿ˜‰



Trying to be at peace with where we are right now is a constant challenge.  It would be too easy to feel depressed and defeated all of the time but it’s pointless to go down that road…we would never make it back.  I look at Tyson and wonder how much more he can take. Tyson is so incredible and his strength and resiliency are serving him well right now.  Some days are much harder than others and sometimes the slightest thing can trigger a memory, awaken a fear, or remind me of what we’ve lost over the past seven years…and these seemingly come out of nowhere, hit like a ton of bricks, and linger for days.  Fighting an illness (and being the sole caregiver in a fight like this) can be extremely lonely and isolating.  To counter this, I rely on the love and support from my friends and family to help keep me up and make me strong because I know that these three guys are counting on me to keep it together.  I crave people and things that put a smile on my face because the alternative is devastating.  I run and do Pilates to keep strong (Tyson is 6โ€™3โ€, you guys ๐Ÿ˜‰) and to keep my mind clear.  I put my “blinders” on and fall back on the hope and the faith that’s carried us this far.  Tyson laughs at me because I do silly stuff to make him smile like dance, remind him of funny things we did together “back in the day”, share funny stories about the kids, and so on.  It’s crucial that we stay in a light mood because the temptation to feel beaten and run down is in our faces day in and day out.  Although we havenโ€™t spoken in over two years, we โ€œtalkโ€ all the time. I joke with him that Iโ€™m getting sick of the sound of my own voice ๐Ÿ˜‚  I still enter a room and ask him questions or talk to him as though heโ€™s going to respond.  I am still working on getting Tyson treatment so that he has a chance at recovery and will have an update to share with you very soon.  Overall, Tyson and I remain hopeful for the future. 

THANK YOU once again for your continued prayers and support and if you’d like to make a donation to Tyson’s on-going in-home physical therapy sessions, please visit his GoFundMe page, http://www.gofundme.com/tysonfowler 

You are all a part of this journey and we are forever grateful for your help and support. 

XO,

Ann

 

2 thoughts on “October 2, 2017

  1. This update was simply beautiful and moving…continue to remain vigilant and realistic!
    A big hug, lots of love and positive energy sent to Tyson, you and the boys. You ALL are simply amazing!

    Nicole.
    (old Polo HQ co-worker)

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s