May 7, 2019

We are home ♥️

The ambulance ride from the hospital Friday afternoon went smoothly despite how uncomfortable Tyson seemed on the stretcher. I sat beside him and held his hands to keep him calm while the paramedic monitored his oxygen, heart rate, and blood pressure. Once we arrived, I hopped out of the ambulance and ran inside quickly to make his bed and change out his suction canister and tubing so everything was all fresh. They brought him through the house and into his room and easily transferred him from the stretcher to his bed. Once they left, I got him situated, gave him his meds, threw on the Golf Channel, and began unpacking his things and organizing his room. The last moments in his room on 04/24 were so fast and hectic; the oxygen tank and tubes were all unraveled in a mess on the floor, various vent supplies were scattered on the bed and window seat, and his closet, which is ordinarily very tidy, looked ransacked from me scrambling to find things to troubleshoot the very serious problem that night.

Tyson still looked absolutely wiped out but finally content. I got him settled just in time to meet the boys getting off the bus. They nearly tackled me over in the driveway and we just stayed there hugging each other for a long time ♥️ Then they ran inside to give Tyson a hug and a kiss and came back outside to play. All was right in their world again.

I’ll go into this more once I have everything organized and in place for Tyson but while in ICU, he received a new trach which is quite different from the other style he’s had from the beginning. What this means for us is that we have to come up with a new bedtime routine in terms of his positioning. I used to put him on his side and have him cradled by pillows behind his back and between his legs and then we’d do an entire series of moves to get his trach and lungs set for sleeping. But in our first night at home, we quickly realized we’d have to scrap that and come up with a new plan because the “old” way created air leaks from his trach’s positioning (air leaks mean he’s not getting his full volumes which is obviously not good). What was frustrating about this is that TYSON had developed our old routine by telling me every single thing he needed from the slight position of his hands, his feet, and his head, to how many cc’s of air he wanted in his cuff (related to his trach). We had it down to a science. And now, as he’s currently unable to communicate consistently, I need to rely on what I know about what he likes and above all pay attention to what the vent is telling me. Thankfully, most of the time I can read his thoughts and I do get it right a lot. ♥️. So after a few hours of trial and error, he was in a position that looked incredibly comfortable and most importantly, his vent was showing that he was getting everything he needed. He finally slept.

We had a quiet, lovely weekend of just nurturing ourselves with rest, good food, fresh air and lots of cuddling. I swear the four of us seemed rather traumatized from this scary event, each in our own way and for our own reasons. However, we got through this crisis and now it’s time to put things back together.

There will be more to come. I’ll go into detail about the few changes that were made as a result of his pulmonary embolisms and so forth and I’ll recap his incredible progress he had made from January to April. I just need time to get my own stamina back and knock a few things off our ever growing to-do list. Thank you all for keeping Tyson in your prayers. He knows how loved he is and that means the world right now.

XO

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