During the month of June, we started the process to have things in place so David could celebrate his birthday at home. Unfortunately, most of my time and energy was spent responding to the medical insurance company questions concerning his progress and they were starting to deny payments.
On June 5, my sister and I packed up the car with our usual cooler and then added birthday cards, a banner, candy bars, and pudding cups. Even though I was grateful the traffic was light that day, I still dreaded the long drive. The good news was that the facility was finally working on the ‘bowel and bladder program’, a critical step toward getting David out of there. When we arrived, David was taken to the restroom located within his room so that his caregiver could document and track his progress. When she finished, she handed me his folder and said we would be his caregivers that day…all we had to do was follow the schedule. If he needed the restroom, we could bring him back and someone would help us.
My sister and I took David to the exercise room, careful to skirt the perimeter of the building to avoid the metal railing so he couldn’t hang on to it. As an intern settled him in for a workout, we had the opportunity to discuss his upcoming visit on June 10 with his case manager (we felt we were often invisible to David’s case manager) who this time didn’t avoid us, a refreshing change and a positive sign. This lack of direct communication was an irritant in an already volatile situation that made me want to run in there, grab David, and put him in our car and drive him the hell out of there! And in comparison, the problem stemmed from the fact that the facility could transport David to his home, but not back to the facility. We didn’t see it as a big deal but an opportunity to stay overnight and do additional observations.
As for the ‘swallow study’, another critical step towards David’s release, his caregiver said if they put ice in the glass, he would drink his supplemental meal which was given him if he didn’t consume enough food during the day. This was interesting because David was never a big eater and we could see for ourselves that he was eating. Later when we brought him in for Speech Therapy, they informed us that he didn’t always eat everything on his plate during his regular three meals a day, thus the supplemental.
After physical therapy was over, we took David to the dining room where we were able to join him for lunch as family or visiting friends were always welcome to eat with the ‘clients’. Food service was not the typical cafeteria style, but rather a server pushing a cart with plates who passed them out to those who were seated; drinks were on another cart circulating around the perimeter. When a plateful (even I couldn’t consume in one sitting) was placed in front of David…he didn’t eat from his own plate, he picked all the chicken off mine and left his alone. (I was thinking to myself that he had already consumed food during the swallow tests…and really…who could eat those huge portions!)
My sister and I shared a glance and at this point, we figured David wasn’t hungry and he could be somewhat depressed – or it could be the side effects of his new medication. Then a picture started to solidify and I wondered what he might be thinking. Lunch came to a halt when David put down his fork and refused to eat anything else. But we encouraged him to drink as his cheeks bulged with food I knew he squirreled away like a chipmunk. He actually still does this on occasion and he doesn’t like it if we ask him to slow down.
There was another session at one o’clock and I dreaded what would come next so we allowed David to return to his room for a brief rest. During this time, we were pleasantly surprised when he paid attention as we spoke to him about his upcoming home visit. What we hoped to gain was to jar his memory, then we worried we would crush his spirit when we had to take him back.
We were astonished at his participation and accomplishment during Speech. He seemed genuinely happy and cooperative and it was a good time to sneak out as a party was planned for other people who had birthdays this week.
We continued to call David around 7:00 p.m. each evening but it was becoming more difficult for us to reach him as there was a single line to his area for guest use and I guess others realized they could also call and talk to people!
We made sure things were in place for his home visit by purchasing a used wheelchair, having a ramp made, and doing the things that would make the house ‘wheelchair’ accessible. When June 10 finally arrived, my sister made David’s favorite foods while his wife made him a birthday cake. When the all too familiar white van drove past the house, I ran out to flag it down, and then took a picture as David was lowered to the ground in his wheelchair…astounded at his legs, as they looked so thin and frail. But he seemed undaunted and waved when he saw us waiting for him. After he transferred to our wheelchair, the old one was loaded into the van and we said goodbye to the driver.
After lunch, David’s wife put his birthday cake in front of him while someone lit the candles. As we sang happy birthday, he reached for the flame and my sister gently guided his hand away. It dawned on me that David might have lost more of his memories than first thought and things he learned as a child growing up. And because his injury affected his ability to speak and understand words – he could not tell us. I began to wonder how much he would need to relearn. Putting that thought to the back of my mind, I concentrated on enjoying the time with David, away from ’the facility’. We didn’t go directly to the facility after the party but rather drove around to give David a chance to recall things, going to both his cousin’s and then my sister’s house. At a stop light, he pointed in the direction of where he had installed the home theater nearly 2 years earlier…and we were amazed because the sign for that street had blown away during the hurricane and had not been replaced yet.
As a distraction, we talked on about what we needed David to do before he came home permanently and pointed to cattle ranches, newly built communities, and orange groves on our way back to the facility. Once David was settled, we knew he would be angry if we left abruptly so we told him we would be back the next day and he seemed to understand. We stayed overnight at a local hotel and came back to observe and discuss our options, now that we had some. The home visit made us painfully aware of what we needed to do. Our new plan of discharge was to have things in place by August 1, and at this point, we were unsure if his wife would take care of him.
On June 13, the facility called to say David was acting very badly; he got so angry that he broke both sides of his wheelchair. My sister felt it wasn’t a bad thing because we were finally getting an appropriate reaction from him. The odd thing was that they didn’t know what to do except stop his therapy. I suggested that when he does this again, they should call me so I could talk to him. And that seemed to work…
The monthly Client Service Plan/Update Report arrived and it contained the usual information about what each discipline (therapy) expected, what they projected for that goal, and the current state of things. Physical Therapy continued to serial-cast his legs each Tuesday, and then cut them down on Thursday, to be put back together with blue compression wrap until it was time to recast his legs. The good news was that David was gaining weight and participating more although there was again no mention of using his expensive leg braces or reducing his G-tube feedings! This seemed ludicrous to us, as we knew they woke him up at midnight for a feeding even though we had repeatedly asked them to remove it. And why would he be eating 3 meals a day…when they supplemented with feedings??? Were they deliberately ignoring our requests so he had to remain there?
Then the ‘treatment’ team suggested more day visits should occur before an overnight visit was approved and recommended that we take things slow so a transition period can be created for him. My sister and I laughed at this. The last few months David’s case manager was practically in our face wanting to know our ‘discharge’ plan and we wondered if anyone talked with each other because we had sent it numerous times!
Mid-June, David’s dad had a trade show in Orlando and several weeks of vacation coming so he came to Florida early to observe David’s latest bizarre behavior in therapy, which was spitting on the table. When we asked to speak to the Director of Physical Medicine & Rehabilitation (because we thought there might be another way to do rehabilitation other than what we were seeing), all we got were blank stares. We didn’t know it but we had struck a nerve. …regardless we weren’t ready to bring him home just yet.
On June 29, David was moved to another building located on the grounds but well away from the exercise building apparently put there as an outgoing client. Then we addressed our latest and greatest plan: ‘THE GOAL PLAN FOR DAVID’ that consisted of our list of objectives from the facility and each discipline and what items we needed the discharge doctor to order for use at home. Then we had a list that David’s family was working on in order for him to be released from the facility.
I couldn’t wait for all this to end…to finally have David home so we could figure out what he needed and get it done for him. We just knew he would do better in the home environment where we could address issues daily – not the one or two times we saw him weekly. Questions swirled around me: what were we in for and… could I handle this by myself? What if his wife walked away while my husband was working up north, what would I do then?