Traumatic Brain Injury Rehabilitation – Stage 4: The Facility Discharge Process and our Goal Plan to bring David home.

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!

coming home for a visitWe 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?

 

TBI Rehabilitation – Stage 3: The impossible becomes the possible: making sense of a tragedy and finding a solution when it seems implausible.

The realization that our son’s rehabilitation from his traumatic brain injury was going to be a marathon, made it clear that I would need my own vehicle in Florida. And on May 1, loaded down with what was left of our son’s life (that he left in our basement) my husband and I set out for Florida.

Looking back at this time, it was the beginning of our migration south. It is interesting how ones’ life can change so quickly when tragedy strikes. We found the best way to deal with the unknowns associated with brain injury recovery was to be flexible and do whatever it took. At least with my own vehicle in Florida, it meant that I didn’t have to fight with David’s manual transmission truck. It was odd to be driving it anyway – it was a constant reminder that he wasn’t here. Then I questioned whether he would ever drive it again. Or worse, could he even drive at all.

We were now in a somewhat stable routine, working on regaining David’s basic physical capabilities, like walking and eating – things we take for granted. David’s step-down unit (one-on-one) caregiver followed him around with a folder; they made sure he was fed either by mouth or via G-tube, and took him to his therapies. David preferred to go right; that meant he was going for a walk or getting his meds. If he went left, it meant they were taking him to the people who hurt him (physical exercises). This is where he asserted himself by resisting treatment and hanging onto the bar leading into the building. However, it also meant that he was fighting to regain his purpose so he could get out of there.

When David first went to the facility, his wife took his clothes home to launder herself, and then gradually allowed the facility laundry to take over. She put his name on every piece of clothing to ensure they would come back to him from the laundry, then gradually, we noticed that he had fewer and fewer clothes.

We began finding David in the common room when we arrived. He would recognize us and get agitated when we didn’t move toward his room. Then it occurred to us that every time he saw us – he thought we were taking him home (or wanted us to). Again, this was encouraging, but heart wrenching because we knew he was not (nor us) yet ready to take this step. My sister and I still had the ‘visit plan’ in place and I showed him his calendar with the date circled (June 5 – his birthday). But it only meant a visit, he would have to complete the ‘bowel & bladder program’, be able to transfer himself into and out of his wheelchair (because I could not pick him up), and be able to pass the swallow tests.

But then, David had always been impatient and this trait was most likely amplified by his injury. At one point, he picked up his wife’s shoes, motioned to the baby’s stroller, and whispered ‘get going’. When we tried to explain that he was not ready to leave, he whispered ‘tomorrow?’ and his Dad told him ‘soon’. He didn’t have to know what we had to do to make this happen. He was only interested in when it would happen. The ‘pep talks’ I gave him over the phone were the same ones I said in person; if he wanted to come home, he had to do certain things – he had to fight his way through the fog to do it!

David’s Dad continued to commute between home and Florida while we worked to shut down his company. We realized that hanging onto the equipment in the hope that David would recover and use it to reopen his recording studio was only a pipedream. We struggled with our emotions and slowly accepted the fact that there was a new David – we as least still had part of him anyway and we were determined to help him regain as much of himself as was possible.

Reports from the facility (called the client plan/update) used functional assessment scales from another rehabilitation institute within the United States that would arrive a month after we needed the information. To have it on a timelier basis, we initiated a weekly report to be assembled by David’s case manager. We could then monitor his weight and other vital statistics in our quest to understand where he was and to help us determine what he would need when he was no longer part of the post-acute campus.

It was early May and David had been in the rehab facility for almost 6 months. I didn’t like going alone to the facility and usually a family member would come along, but on one occasion, a good friend came with me. We got into a discussion and I missed the turnoff. On the open back roads of what we nicknamed ‘middle earth’, swarms of tiny bugs spattered the windshield and were on most of the other vehicles on the roads and in the facility parking lot. We didn’t know what to make of them. All anyone could tell us was that although the bugs were messy, they were harmless.

When we arrived late that afternoon, the speech therapist informed us that David ate breakfast and everything on his lunch plate. This was great news and we naturally assumed the tube-feedings would stop; however, the swallow tests were not yet completed so we had to wait. This was typical, one-step forward and a half step back… at least there was more momentum moving forward than backward. P/T continued to serial-cast his legs, and allowed him to use the assisted tall-walker. Another encouraging sign was when his comical side showed up when he picked his feet up off the floor as the assistant pulled the walker – she noticed and told him to put his feet down and we had to chuckle at that! We had to keep reminding ourselves that if we were going to win this marathon, we had to persevere and go the distance.

The new date for David’s home visit (to the house he bought before he had his accident) changed to June 10 because the facility would not agree to this until they conducted a home evaluation. Again, we were completely frustrated with their inconsistency. This is when David asked where Dave was…and I explained that he had to go back home. He asked when he could leave and smacked the table when I told him ‘not today’ and then told him that the date changed. His caregiver knew the drill and distracted him so we could leave.

This was always the hardest part for me – knowing we had to leave him there to fend for himself made me cry every time I left him. At this point, I was angry that David was so frustrated. Then part of me hated the long drive to and from the facility, and part of me was grateful that David had come so far. I felt that he was trapped in a body that didn’t want to do things – also trapped in his mind because his mouth couldn’t say the things his brain told him to say. I knew it was going to be a long, long road to recovery, but now there seemed to be a light at the end of the tunnel.

On our way home, the tiny bugs flew at us from every direction and by the time we got to my friend’s home, I had used up all of the windshield fluid. It took a roll of paper towels and a lot of elbow grease to take them off…we learned later that it had been a rare occurrence – some blamed the University of Florida for unleashing an experiment gone awry – a completely false accusation – yet there they were.

The medical statements, invoices, and Explanation of Medical Benefit forms were piling up. It was hard to understand them so I made calls for clarification. It became increasingly difficult to deal with the bureaucratic red tape – they could not find the authorization letters that I sent them repeatedly – HEPPA laws changed…and my frustration level was elevated!

Finally, the facility conducted a home evaluation and approved a one-day visit. The facility van would bring David home but one of us would have to take him back. Even though it would be a week after David’s birthday, we could have a little party for him. Then my sister and I wondered if we jumped the gun…would David see it as a tease and get upset when we took him back?

Bringing David home for a visit was an important step to determine both his and our ability to care for him and the facility kept asking how we were coming with our discharge plan. Funny how they wanted to know what those plans were when they weren’t moving very fast on his bowel & bladder program and the case of the missing clothes became a joke when we found him in someone’s shorts that were three sizes too big!

On May 25, the facility transported David to the hospital that did his original surgery. He met with the Neurosurgeon to do a follow-up check on his ‘bone flap’ and the depression that seemed to be getting worse. The Neurosurgeon suggested that David remain for surgery the next day. This would be the third time David had his skull opened…how much could a person take? During this time, I called his wife to explain what the doctor had said but the call went straight to her voice mail.

It was emotional when nurses recognized David’s name and stopped by to say hello, and then asked about his baby and wife. We met so many caring people during the months he was hospitalized after his accident that I wanted to come back so he can thank them.

After nearly three hours in surgery, the Neurosurgeon told me that everything went well and someone took me to see David in recovery. I touched his hand and he smiled at me, and I knew he was okay – then he squeezed my arm. Still, there was no word from his wife.

David returned to the rehab facility, and we went back to our routine with the added nightly phone call. It was a stroke of genius (or dumb luck) that day in April when my sister called David’s building and spoke to him on the phone and we realized his speech was better when he had a phone in his hand. We also understood how important this connection was for him to be able to speak to his family while he was so far away from us. It also made me feel good to hear his voice even though it was only a whisper. Unfortunately, his wife never tried to call him and it’s probably why he can’t say her name today.

Because we were at the facility several times a week, we saw first-hand what all the therapy sessions were doing with and for David. In the back of our minds, we wondered why we did not see any doctor in the building where P/T, O/T, and Speech Therapy took place. We also had concerns over the obvious lack of weight gain and the delay with the G-tube removal and discontinued feedings.

As we all worked to ‘get David home’, I realize now that his wife was not capable of taking care of a person with this type of injury although she made a good attempt early on to project the ‘good wife’ image. It was obvious that any future home rehabilitation would probably not include her, so we set about to plan accordingly.  David’s wife was becoming an obstacle… we will use this as an opportunity!

“An obstacle is often a stepping stone.” – Prescott

Please visit my website: www.maappleby.com to see the progress of the books that I have written as a way to cope with our family tragedy.