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Preparing For Home
Matt had been at Sunnyview for 100 days when we sensed an urgency to firm up arrangements for a suitable sub-acute rehab facility. For four months, his health insurance company had authorized his stay on a week-by-week basis, and his benefits might end soon. It was risky to hope and wait each additional week because if they said stop, we’d have little time to arrange care elsewhere. Mike and I looked for facilities with specialized TBI units within an hour's drive or less, which had an excellent reputation and a bed available at the moment of our need.
From five options, we narrowed our search to two subacute rehab programs, offering two and a half to three hours of rehab a day compared to the traditional one and a half hours at the other three. The one within 5 minutes of Sunnyview had no immediate openings. We applied there, and our second choice, although it was an hour and a half away in Massachusetts. Going there meant we wouldn’t be able to visit Matt as often as we currently did, which was an unsettling thought. Weighing the options, we agreed it would be better to sacrifice our time with Matt in exchange for the opportunity to continue his progress along an upward trajectory at a ranked institution. Our prayers for an opening at our first choice ramped up.
The answer came quickly. Several hours after making this pivotal decision, a local bed became available! We felt so blessed with this excellent opportunity, just 35 minutes from home, that would allow us to maintain a high level of involvement in Matt’s care.
In mid-August, Matt moved. Immediately, Matt wanted to come home, then and there! He begged us. It broke our hearts to say, “Not yet.” We needed time to prepare, and Mike and I had committed to working through Labor Day weekend to allow our colleagues to have their end-of-summer vacations. He still begged, which was justifiable, when the services didn’t meet our expectations. Its 4.5-star brain injury unit didn’t align with advertised claims and promises and, quite bluntly, was a huge letdown.
Sometimes, OT and PT visits overlapped, reducing the total number of contact hours Matt had in therapy, and there was no therapy on the weekend, leaving lots of time idly sitting in the hallway near the nursing station. In contrast to the success Matt had demonstrated ambulating with a regular walker at Sunnyview, physical therapy retreated to the safety of a bilateral platform walker for some time and, in doing so, could have retarded his forward progression. The one redeeming program was speech therapy, which gave Matt a leg up by utilizing a Visi-Pitch stimulator to wake up and activate his vocal cords. Knowing it was temporary, we stayed because the alternatives were slim.
I did my best to compensate for what was lacking and further supplement therapy services. Matt and I worked very hard on dressing, morning self-care, exercises, walking, talking, and mental exercises. I did not have access to the facility’s therapy gym; therefore, we exercised in his room and walked in the hallway. With some hesitancy and reservation, I took a forward-looking giant leap and started using the regular walker. Slowly and cautiously, Matt and I proceeded, going for the Gold. By now, you may have ascertained that I’m a full-steam-ahead kind of gal, and my unease indicated how momentous this endeavor was. It was tricky to maneuver the standard walker while simultaneously offering physical assistance and coordinating the timing and intricacies of each step sequence. Sometimes, his right hand needed my help to grip the walker, his right foot required a nudge to step, and the walker sought to run away—and sometimes, we faltered. In the beginning, it was awkward and most likely made passersby cringe, gasp, or turn away—yet we triumphed and ultimately accomplished our stretch goal to graduate to this walker in time to go home. Wisely, we didn’t show Mike until we had “perfected” our technique.
As the clock ticked down, we busied ourselves, preparing at home. Friends examined our home and recommended rails for the toilet, bathtub, and stairs and advised us to move furniture to improve accessibility for the walker. The social worker ordered a walker and wheelchair, and we purchased a shower bench and commode chair. For his part, Matt conceded to work hard with nursing and therapy.
One afternoon, I wheeled Matt out to the parking lot to practice getting into the passenger seat of my Toyota Prius. I removed potential obstacles (e.g., wheelchair leg rests and car paraphernalia), parked his WC alongside the car, recruited my Popeye muscles, tightly grasped a waist belt, and with audible grunts—mine, not his, he got to his feet. We clumsily turned and barely sat on the edge of the car seat before scooting further back and wrestling his legs into the foot well. It was a confined space, awkward, and took finesse to do safely. Once in position, Matt smiled and got comfortable—real comfortable. He was ready to go. When I explained it was time to get out of the car, he adamantly shook his head no and resisted my initial attempts. It was both cute and heartbreaking. He must have thought he was going home or at least for a joy ride because he was downcast when we wheeled back inside.
The next time, we vacated the parking lot on an adventure to Panera Bread for lunch. It was a beautiful fall day. We sat outside in the warm sun, and for the first time in ages, Matt ate “real” food. He was in heaven. Friends even stopped by our table to say hi and encourage Matt in his ongoing recovery.
The next great exploit—it was, after all, uncharted waters—was a day visit at home followed a week later by an overnight stay. Matt conquered the first barrier, four steps into our front door, relying on the rail and a strong person. We left the WC in the car and allowed him to use his walker with us. Matt walked slowly, requiring help, as noted earlier. Our family congregated on our backyard deck. He was unbelievably excited and engaged, wanting to participate in whatever was happening. We stationed Matt at the patio table to help husk corn, stuff jalapeño peppers, and make hamburger patties. He didn’t realize, or even care, that his sister and I were helping him do much of the work.
But to Matt, who had lost so much, he was making a contribution for once rather than having things done for him. It must have felt good. He was happy and content in the moment. His smile reflected his joy and filled our hearts with love. We couldn’t help but reflect on the fateful day we committed to keeping Matt alive, not knowing how far he’d come—and by virtue of being here now and interacting with us all—an awareness of greater possibilities ahead renewed our hope.
The overnight visit gave us a further glimpse into the challenges ahead—the demands of walking rather than riding around in a wheelchair, particularly fatigued Matt. As we went, we learned to limit his trips to meals, the bathroom, and finally to bed. Undressing for bed and getting dressed the following morning were an ordeal. It was exhausting for Mike and me. Everything took an effort and triple the time we had anticipated—and this was only a hint of what lay ahead 24 hours a day, seven days a week. Yet despite this, we were so excited and hopeful. Matt was in his element, basking in the opportunity to watch TV, play Sorry, and spend time with us in a familiar and welcoming environment. This was in stark contrast to the past five months of institutional living—memories we were all eager to put behind us.
Days before Matt’s discharge, I spent a weekend at his house in Pennsylvania, packing his belongings and cleaning up before renters moved in. Members of his church, the engineering department head, and ten students from Lafayette College came to my aid and packed the bulk of items in two hours. What a great group! The students asked me to give Professor Watkins a get-well card full of heartfelt comments: “The Electrical and Computer Engineering (ECE) department isn’t the same without you!” “Professor, your absence is really difficult to adjust to.” “The ECE dept. needs you back.” “Everybody deserves to have you as a mentor in their life someday.” “We really miss you and your interesting courses a lot.” “ECE life just isn’t the same without you.” “You were an amazing mentor and advisor!” “Wish you the best.” Their sentiments expressed volumes that would inspire Matt and us from now on.
On Friday, September 7th, 2018, Matt waved goodbye to healthcare facilities and finally came home. A large banner greeted him upon his arrival, acknowledging this sweet accomplishment. Matt was home—tangibly here now and with us at this moment—and his presence filled us with an overwhelming sense of awe and gratitude. We had come so far, but no doubt, the terrain ahead was equally rugged. We would need to stick together, continue to press forward, and never stop reaching for the moon and beyond.
The first leg of this noble recovery mission was over.
