Sweat Tea, Baby

To say that we were spoiled during our time at the NIH would be an understatement.  The attentiveness to my every need, the communication between my teams and with Jodi and I was second to none.

And then there was UAB.

In their defense, it wasn’t all their fault.  I was quite a unique patient and I had many, many unique needs.  Gone was the round the clock sitters that I would have at my disposal.  Gone was the one nurse for every two patient ratio.  Gone was the superb communication between teams.  

On one of my first nights, the nurse came in with my evening meds.  Frankly, I was on a lot of medication, and I wasn’t able to keep them all straight in my mind.  As a part of protocol, the nurse would announce each med one at a time while preparing them for my consumption.  It was both a quality control check to make sure we weren’t missing anything, and a training technique helping me remember which meds I took at different times of the day. To be honest most of the time I zoned out and focused on Wheel-of-Fortune while they were rattling off drugs so I didn’t catch the mistake. But on this particular night, as he was calling out my meds, my mother noticed that my anti-fungal drug (posaconazole) wasn’t mentioned as he doled out my evening doses.  Considering that I was just coming off of a major fungal infection, this medication was kind of a big deal.  When mom mentioned it to the nurse, he checked and told me that it had been discontinued.  What came next was a very serious conversation with the nurse in which we had to convince him to get some doctor, somewhere, on the phone because I simply could not go without this medication.  Finally, the he exited my room and found his way back a short time later, a little frazzled from his conversation with the doctors, carrying my posaconazole!  Finally we were able to get the correct medication and the problem was rectified.

Complicating matters even more was the fact that I was in Spain Rehabilitation Hospital, and although it was located in the same complex as the UAB medical center, the communication between the hospital side of the complex and the rehabilitation side of the hospital wasn’t always the smoothest.  Although I was cleared to begin inpatient rehab, I still had some medical concerns that needed to be dealt with, and this would require my transfer between the rehabilitation hospital and the medical hospital. I showed up on July 1 with my feeding tube still attached to my stomach, but it was completely unnecessary as I was eating and swallowing well at this point. My rehab doctors sought to have it removed, but that required a copious amount of paperwork, insurance approvals, doctors’ signatures and communication between the two hospitals that dragged on for much longer than it should have.  After a couple of failed attempts, I was finally ushered across the long hallway where I would have the tube removed and another unnecessary hole in my body closed up for good!

We were also no longer in the government run NIH, which meant we found ourselves having to deal with insurance companies again.  After a week of therapy at Spain, my caregivers contacted Jodi to let her know that we needed to move the house renovations along as quickly as possible as the insurance company was already pushing back on my inpatient status citing a lack of progress on my part.  They had appealed for more time, but everyone was unsure just what would be approved. Time was of the essence.

What this meant in the short term, is that my time at UAB would be best utilized fitting me for my new power chair.  The chair that I was currently using was a loaner, and although it fit me better than the chair I used at the NIH, it still was not custom made for me.  Every morning and my occupational therapists would come to my room and pick me up (literally) and place me in my loaner chair, and wheel me down to the therapy gym where they would work trying their best to get my arms moving again.  Then I would be handed off to my physical therapist who would take measurements and painstakingly document all of the features she was convinced I would need in my permanent chair.  All of this had to be handled correctly, or insurance would reject it and we would have to start over.  This process, though necessary, was incredibly frustrating for Jodi an I, because I spent large portions of my time simply sitting, while my physical therapists made adjustments to my chair and documented those changes for the insurance company.  In my weeks a UAB, I would actually regress in my ability to ambulate, not because of any lack of effort from my therapists, but because of the cyst that was still pressuring my spinal cord.  It seemed to everyone, especially me that I was not getting better, but worse. My depression worsened and the darkness was ever present.

But it wasn’t all discouraging! My time in Birmingham did have some high spots!  I was much closer to home, and I was in the same town as so many family and friends.  Although Jodi wasn’t there the entire time, I was taken care of my my mother, my bonus-mom Cindy, Jodi’s friend from high school, Karinena, and Jodi’s brother, Jason.  They all fed me meals and kept me company as I passed the days away in between therapy sessions.  In addition, I had plenty of visitors who stopped by to say hello, including the Crosswind Student Ministry stopping by on the way back from summer camp at the beach.  I ate some good food from some familiar locations, Dreamland ribs, Milo’s burgers, Chic-Fil-A and so much more.  I was back in the South, baby, and that meant I could finally get some sho-nuff sweet tea again.  It’s the little things.

I was also learning how to navigate in new ways. Because of my decrease in mobility, it was determined my new chair should be equipped with a Sip-and-Puff control.  This would allow me to drive my chair and control it’s functions with my mouth, using a straw, rather than my hand, as I didn’t have enough strength to use my hand.  Even though I was months away from having my own custom chair, my therapists outfitted my loaner chair with a Sip-and-Puff control so I could practice.  For the first time in months, I was able to control, at least somewhat, my own movements in and around the hospital.  It wasn’t perfect, but it was more freedom than I had had in some time.  

And then came my first wreck… 

While driving down to the hospital lobby, with Jodi by my side, I needed to make a right hand turn through a set of double doors.  To turn right, required a soft-puff on the straw, while to accelerate required a hard-puff into the straw.  Apparently my puff was a little too powerful and rather than turning through the door my chair began to speed up.  In a panic, I went again to soft-puff, this time quickly, in order to begin the turn twoard the opening. Only once again the strength of my breath cause me to hasten even faster toward the doorframe.  Before I could take my mouth off of the straw to ask for help or scream in desperation I rammed my foot into the door bending it backwards.  It was a good news/bad news moment.  The bad news was that I had seriously hurt my foot.  The good news was that I could actually feel the pain!  Glass half full, I guess.  A quick x-ray confirmed that my foot wasn’t broken, and with a little more practice, I avoided any more fender-benders…. for the most part!

After a few weeks, it became clear that my time at UAB would not be as productive as we all had hoped.  My very talented team had completed the process of fitting me for my very own power chair and the orders had been placed with the insurance company for their approval. 

At this point and time there wasn’t anything else they could do.  Outpatient therapy was set up locally for me upon my return, and plans were made for my discharge and trip home.  I had not been in Union City in 5 months.

The girls and I were discouraged I wasn’t going to walk out of the hospital, while excited to all be under one roof again.  Honestly, I was terrified as to what would happen once I got home.  I was a shell of the man I had been when this journey first began, and I was unsure if I would ever resemble that the old Jeremy again.  I knew I was going to be a burden to people, and it killed me to know just how much I would have to rely on everyone.  I remembered all the stories in scripture of paralyzed men and how Jesus had touched them and  restored their ability to walk.  Oh how I prayed that he would do that for me… it just didn’t seem to be in the cards.  

But I want you to know that the Son of Man has authority on earth to forgive sins.” So he said to the man, “I tell you, get up, take your mat and go home.” He got up, took his mat and walked out in full view of them all. This amazed everyone and they praised God, saying, “We have never seen anything like this!” 

Mark 2:10-12

Then Jesus said to him, “Get up! Pick up your mat and walk.” At once the man was cured; he picked up his mat and walked. 

John 5:8-9

When Jesus had entered Capernaum, a centurion came to him, asking for help. “Lord,” he said, “my servant lies at home paralyzed, suffering terribly.” Jesus said to him, “Shall I come and heal him?” The centurion replied, “Lord, I do not deserve to have you come under my roof. But just say the word, and my servant will be healed. For I myself am a man under authority, with soldiers under me. I tell this one, ‘Go,’ and he goes; and that one, ‘Come,’ and he comes. I say to my servant, ‘Do this,’ and he does it.”

Then Jesus said to the centurion, “Go! Let it be done just as you believed it would.” And his servant was healed at that moment. 

Matthew 8:5-9, 13

We used a Hoyer lift to get me into the front seat of Jodi’s Tahoe, the SUV that I had bought for her just a month before I would have to take a leave of absence from Crosswind. 

My father then wheeled my loaner power chair and a brand new Hoyer lift onto a trailer that we were towing.  The Powell girls climbed into the back seat and Jodi pointed the vehicle northwest, and home.