If months were roller coasters, the last four weeks would’ve been crowned the Kingda Ka of the year. We entered Cooper Hospital on July 16th, 2015, for what we thought was going to be a fairly simple procedure, and ended up doing a free fall at 70 mph, and crashing down so far that we thought we’d face-plant on pavement. Lucky for us, neither of us needed to wear a helmet this time. (little TBI humor there).
It had been my intention, among other unrealistic tasks I thought I’d accomplish (like reorganizing my closets, going to yoga, eating a diet of nothing but kale and wheatgrass, etc.), to blog every day while I had my “break” from TBI. I imagined that I would bounce back from months of exhaustion/stress to Superwoman very quickly. Even more naively, I thought that I could take a step back from advocating, and that things would go smoothly without my “hawking” the facility.
I was wrong.
The transition to acute rehab felt like we were trying to reverse a wheel that we’d been spinning at 100 mph for years. Suddenly, it came to a halt and we were violently jerked forward by the stop of motion. Then, as we were separated, wheel began to move in the opposite direction, and nothing made sense anymore. Patrick hated the facility. I hated that he hated it. With every text and phone call, he vomited out his negative emotions. He was in an isolation room which was small and dark. He was told he could only shower every other day, but had terrible diarrhea. Before surgery, he had been walking everywhere with me, and doing dishes and laundry in our home. Now he was not allowed out of his wheelchair even to stand unsupervised, and I was not allowed to walk with him, lest a nurse document it and the insurance company deny us therapy. He was getting IV antibiotics 4x a day, plus an oral antibiotic. The food was terrible. His c-diff raged on. In a word, he was miserable.
As many of you read, I had a complete breakdown/panic attack around day 3 of my “respite” from caregiving. I didn’t know how to fix any of the problems that Patrick was experiencing, and watching him suffer was grinding me into dust. Being home without Patrick made me feel suffocated by my own freedom. The stress of the hospital experience came to the surface, and I paced around the house, crying, freaking out and feeling fatalistic; unable to contain my own agitated energy for days and days.
It took me a solid week to begin to calm down. I didn’t go to Bacharach very much at all. I tried to talk to Patrick’s doctor by phone several times, but when she didn’t return my calls, I found I didn’t have the energy to push any harder and demand she talk to me. So for the first week, I simply…floundered.
Then, on the first Saturday night at Bacharch, Patrick texted me something strange.
“I’m off antibiotics,” he said.
“You’re what? No, you must have that wrong. You’re supposed to be on them until August 13th.. that’s another two weeks.” I said.
“I told the nurse that,” he said. “She won’t listen to me! I am off of them!! ” (insert a litany of curse words wrapping around his anxiety).
Patrick’s PTSD makes everything into a crisis, and it’s hard as an empath to not absorb all of his fear and make it my own. I tried to stay calm, and called the nurse’s station.
“Hi. I’m Patrick’s legal guardian. I understand he’s been taken off antibiotics? There’s been a mistake. He’s supposed to be on them for two more weeks.”
“Do you have the security code, Miss?”
Damn it. The security code. I had forgotten to get the security code! (You always need one in order to be given access to information over the phone).
“No, I don’t. But I am his guardian. You can have him call me on his cell phone and I’ll talk to you on speaker. This is important. He can’t come off antibiotics.”
“Without a security code, I can’t disclose any information miss, but I assure you, he is fine.”
“Not really though. Listen he has an infection and…”
“He has NO signs of infection and is off antibiotics. I shouldn’t even tell you this but there was only an order for 7 days. He’s doing well. Relax. Come talk to the doctor on call tomorrow.”
“But… the discharge papers say…”
“Come talk to the doctor on call tomorrow. Goodnight!”
That was the moment I got back into the game. The next afternoon, I went after work looking for the doctor. But naturally, she was not in the building. I tried to talk to the same nurse face-to-face, but she kept assuring me that I was wrong. She also told me that Patrick was “perseverating” on antibiotics, and on cleanliness ( I.E wanting a shower every day) because he had a brain injury. I was livid. People are always quick to write off Patrick, instead of LISTENING to him because of his brain injury, and 9 times out of 10 he KNOWS exactly what he is talking about! Rest assured, on Monday morning, Patrick told his doctor there had been a mistake. And guess what? He was right! He had missed a day and a half of his meds. They had to call our ID at Cooper and explain their faux-pas. He was started back up on them Monday morning.
Meanwhile, in therapy things weren’t going that well either. It takes a while for therapists to become acclimated to a new patient, and to figure out the best strategy for making improvements. Yet insurance companies often only grant patients like Patrick 7-10 days of therapy (and weekends count, but they do not receive therapy on those days). So just as you are beginning to actually improve, they cut you off and send you home.
By the end of the first week, he had been granted an indefinable amount of time to stay, but was continually unhappy, and I was unhappy with his treatment. They had started him on muscle relaxers to combat his spasticity, and he seemed tired all the time, extremely drowsy, and was experiencing outbursts of rage. It seemed he was making no progress in therapy, and after being bed-bound for 9 days at Cooper, was now spending most of his time in the wheelchair. I feared he would come home having regressed, instead of progressed. I considered pulling him from the facility.
The second week of rehab, I began showing up for all of Patrick’s therapy sessions. I took time to get to know his therapists, to share my knowledge of his injury, and to learn all I could about how to help him advance in recovery, just as I had done when he had acute therapy right after his accident. I spent a lot of time around the nurses stations as well. I observed quietly what was happening in those halls. And then, I handpicked aides that I liked and went to the supervisor to request they work with Patrick whenever on staff. I requested certain aides NOT work with Patrick. Things began to slowly improve.
As we finished our 3rd week of therapy, I began to notice that he was making progress. His PT, a fantastic, caring, exuberant woman named Lisa, taught me so much about Patrick’s body, and how to approach his therapy moving forward. He had been walking (guarded) with a cane before surgery with a host of body mechanical issues. His PT discovered that a walker, which he could not previously use correctly due to no use of his left hand, corrected MANY of these problems. The result was that he was walking more independently with better body mechanics. We are hoping that in time this will carry back over to the cane again.
Last Friday, the day before his discharge, I picked Patrick up and drove him to Cooper for 3, (count em THREE) doctor’s appointments. On our way up, I turned to look as he opened a sealed cheese stick with his left hand. I nearly cried! That’s when I realized that he had made progress in OT as well, because that was something he was never able to do before!
The doctors visits went very well; the glue was removed from his incision, revealing the prize we had set our eyes on through this grueling 3-month journey; a gorgeous, new, symmetrical head. And after being without a skull plate for over a year, what a sight it was to see!
His infectious disease doctor made the call to take him off all antibiotics, worrying that they were doing him more harm than good. (I love conservative doctors). We are all now crossing our fingers that his head infection does not return, and we are home free.
On Saturday morning, August 15th, 2015, exactly one month from the night we spent in a hotel preparing for surgery, I took Patrick home.(It should be noted that due to a computer glitch, I found out the hospital had been administering him 500 mg MORE of his seizure meds than he was supposed to be getting, which explains his “Kep-Rage” and exhaustion. Which only makes me want to emphasize even more the need for advocacy when dealing with a hospital or rehab facility. I honestly regretted not “hawking” more than I did during his stay).
Once over the last hurdle with the meds, we said our goodbyes, packed up his stuff, and busted through the doors. As we rolled out into the sun, we felt like true champions; fighters that had went the whole 12 rounds without giving up. We had been knocked down so many times, but every single time we had gotten back up! And finally, operation “Summery of Surgery” was complete.