**I started writing this entry yesterday and meant to finish last night, but we had a late night; Tyson had a tough time getting comfortable. All okay today though 🙂
Hello everyone and Happy Father’s Day! It’s been a little over a month since our last update and I figured Father’s Day would be a very fitting time to resume our story.
I’ll be honest with you, when Tyson came home, I was very concerned with how we’d manage. Would I even be able to care for him? He required more assistance and was very weak and I was becoming increasingly weaker myself at the 35 wk mark of my pregnancy. However, we stuck with our motto that “every day it’ll get a little easier” and it’s rung true for us.
Because of his weakened state, it was necessary to have someone stay with him during the day while I was at work. Our good friend, Gia helped us out for 2 wks. I taught her how to do his feeds through the feeding tube and how to give his meds through the tube as well. And because his hands were too weak to operate his wheelchair, he needed to have someone around to push him if necessary. After two weeks, his trunk strength had improved enough to the point where we weren’t worried about him tipping forward out of his chair and with the OT work he and I were able to do from time to time on his hands, he regained enough strength to use his joystick on his chair again finally! With these two achievements, we then felt comfortable leaving him home while I went to work. I came back midday every day for lunch and we stayed in contact through texts all day long as well. This was our old routine and being able to go back to it after being home only two weeks felt good, as crazy as that may seem…but we were getting back on track.
Speaking of therapy, Tyson and I got into a good regimen of doing his leg exercises each morning and when life got a little hectic, we still managed at least 3 sessions a week. We are very fortunate that he and I are both at the same “skill level” right now 🙂 He can’t do too much in the way of physical therapy (i.e., walk, etc.) and I am incapable of helping him much more than I am because of my growing belly! Going back to Burke at this point isn’t even an option for us for that reason; the process of loading Tyson into the car and getting him to White Plains would leave us both exhausted and more importantly, HE would be too wiped out to be productive in his sessions. And since we only get 30 sessions a year (can you believe that?) we want to save them for when he will benefit the most.
We also continued on with his Lyme IV/antibiotic protocol, which you may remember was put on hold while he was in ICU and for the duration of his stay at Apollo but resumed at Nu-Tech under Dr. Shroff’s care. With the exception of a couple essential medications, Tyson’s other meds have taken a back seat for the time being while he stabilizes and recovers from the traumatic past few months. We figure after his next trip to India, which will be in July, we will talk with Dr. Shroff and his two Lyme docs and neurologist back here and come up with a schedule to resume his other meds.
So, on average, Tyson received 3-5 cans of his feeding tube formula per day. This gave him an ample amount of calories along with the proper nutrients and vitamins he needed to support his system and help the stem cells do their work. Never pushing him, I would try to offer him a bite to eat here and there at meals. He had a bite or two of the split pea soup I sent him in India but I didn’t want him to get discouraged and be afraid to keep trying. He asked me one night (after being home for 2 wks or so) for a bite of Cal’s macaroni and cheese. He had about 5 small spoonfuls and we were both thrilled with that accomplishment!! The following day, I offered to get him a healthy smoothie on my way home for lunch one day and he was able to enjoy about half of it! So, slowly we introduced new foods to his regimen. Some foods are still difficult for him but overall, he says he feels stronger than before leaving for India in mid-March. He’s so happy to be able to enjoy coffee, hamburger, pasta, and even muffins! Water can be tricky but he does very well with it. We make sure he has a feed at least once a day because while he is able to eat at every meal with me and Calvin, he’s not eating enough to constitute as an entire meal. Regardless, it is progress and we are grateful!
Regarding his bi-pap machine/breathing mask, there are no changes to report and that’s okay. At least he hasn’t declined in this area. Cal made it clear the first day that he was not a fan of the mask, but we explained that it helps daddy to breathe and that made it easier for him to deal with. Every morning when I pick Tyson up out of bed, I immediately remove it (he only needs it while he’s lying flat) and Calvin says, “you feel better, dad?” So sweet :). Tyson doesn’t struggle with his breathing throughout the day unless he stays up too late and tires himself out. A handful of times at night, he does struggle to catch his breath even with the mask on but he says it’s because he can’t clear his throat very well. His cough is very weak still, but like everything else, he’s still much improved from a couple of months ago. So we stay patient, he drinks a few sips of water and we wait until he’s comfortable before I lay him back down. Sometimes he’s recovered in 10 minutes and sometimes, like last night, it takes an hour. While in ICU, they checked his blood gases every day (among other things, this tells us his CO2 level which is our marker and tells us if he’s breathing and exhaling efficiently enough). As his levels gradually stabilized, there was no longer a need to check them. I would like to have them checked while he’s home just for an update and so, I recently met with one of his doctors and asked him to write an order for us to have it done when we are at the hospital for our son’s birth. I realize how crazy that may sound, but this type of blood work is very sensitive and can only be done in a hospital setting because it needs to be rushed to the lab within a few minutes and under special care. I’m not saying we’ll have this test done while I’m in labor, but perhaps the following day ;). It’s all about taking advantage of opportunities.
Also- for the past several months, Tyson’s therapist at Burke had been trying to get us a piece of exercise equipment for our home which is a gravity-eliminating sling of sorts for Tyson’s arm. Using this device would allow Tyson to work on his range of motion, gain strength and it could potentially be used for Tyson to feed himself. We were denied coverage by our insurance and the piece would’ve cost us a little over $2,000. We were so disappointed and couldn’t understand why we wouldn’t be approved for such a useful piece of equipment. A letter from our insurance company later explained that the reason for the denial was because Tyson was labeled an ALS patient by Burke and with that diagnosis, there is no need for a device like this. There is no improving with ALS. So, I asked his therapist if she could re-write the letter and state that Tyson has Lyme disease with ALS manifestations and that with therapy, he does see improvement. We were finally approved! (Thank you, Andrea!!). It’s set up and we will test it out tomorrow 🙂
We completely understand why he’s labeled an ALS patient so often. His case of Chronic Lyme and the way it’s manifested is so rare that it’s just simpler, I suppose, to give it a more common title describing the symptoms and effects…one that people could grasp or relate to more easily than to explain the complexities of Lyme. It’s easier for some to believe he could develop ALS out of the blue with no family history than be paralyzed by a bite from a tick. It is true that his diagnosis is labeled by our docs as “Lyme with ALS” but the important thing is to realize that the Lyme is present and acknowledge the power and significance of that. Once we eradicate the Lyme bacteria and have the stem cells repair and regenerate the damage caused by them, Tyson should be healthy once more! Again, Tyson’s saving grace is the fact that he does have Lyme- that feels so crazy to say. From time to time I’ll even say to him, “it’s just Lyme disease, Tyson. You got this!” I feel this takes it’s power away.
Medically speaking, that’s about it for our updates. Tyson and I agree that there has been zero decline since he’s been home and with that, there have been some pretty small but significant improvements. We know that it’s crucial for Tyson to stick with a strict stem cell/Lyme antibiotic regimen, going to India roughly every 2-3 months until he’s in better shape and the Lyme is knocked down considerably. We cannot afford to take breaks or slow down until we’ve beaten this. I’m proud of him for keeping his chin up and finding happiness everyday and I’m proud of us for staying strong through this. Sometimes I want to break down..sometimes I can see that he’s about to break down and naturally, from time to time, we succumb to the stress and the strain of it all. Things are not easy and no, this is not how we pictured our life together. But- we are together in this. How lucky are we to be able to look back at the past few months and say that Tyson survived and not only that, he’s stable and improving. I remind him (and myself!!) of this when he needs a boost. We will get through it by staying positive and keeping focused on the future. We constantly talk about doing all the things we want to as a family of four (we have quite a list going!).
On that note, I recently started my maternity leave and naturally decided I needed to hang some pictures in the living room 😉 I hung several from our wedding, some Indian art and my favorite photo of Tyson dunking a basketball at one of his high school games. I believe it’s important for Tyson to be reminded and for Calvin to see what daddy really looks like. Just the other day, Calvin jumped into bed and said to Tyson, “daddy- tell me a story from when you weren’t sick”. It nearly made me cry but I looked at Tyson and he loved it! He loves that Cal asks questions and is interested. I explained what “temporary” meant when Calvin asked why daddy’s hands and legs don’t work. Cal can’t wait until daddy is “big”, aka, walking again so they can play golf and baseball together.
Our due date for baby #2 was yesterday and quite frankly, we are both shocked we made it this far! We placed bets that he would come early. My doctor is so amazing and always asks about Tyson. So, when I expressed a little sadness that Tyson wouldn’t be able to do the normal “father” things for this birth that he did with our first like cutting the cord or holding the baby in his arms, she told me she would let every doctor in the practice know the sort of help we’ll need to make these things happen for him. In addition, she called Greenwich Hospital and requested a room with two hospital beds, should Tyson decide to stay the night. He will likely stay home because he requires so much help throughout the night. And besides, Cal needs his dad home with him. So now, we wait. The baby could come any day now!! We are all so excited and will let everyone know when the little guy gets here 🙂
I’ll leave you with a couple of my favorite pics of one of the best dads in the world:
Ann & Tyson