RALEIGH (this post covers time period from Christmas 2018 to Oct.2, 2019)

The ulcer was looking good again, so Dad was cleared for travel to Wilmington (Robi's house 2 hours away). We took him there for Christmas. Within 2 days, he began running a temperature and it spiked from 100 to 103.5 in an hour. My sister rushed him to the hospital in Wilmington where he was admitted to the ICU with a severe urinary tract infection. There he also developed pneumonia, again. Both cleared up within a week and they transferred him to acute rehab where he once again began intensive physical rehab. Unlike the neurosurgeons in Pittsburgh, the neurosurgeon at this small regional hospital in Wilmington ordered MRI's of his spine and was very concerned about the growth (cyst, although he wasn't so sure that it was even a cyst [Syrinx]) that Presby had diagnosed him with based on imaging alone. So the neurosurgeon at New Hanover Regional Medical Center suggested that Dad have exploratory spine surgery to look at what's going on his spine and see if it is operable or not. He stated more than once, that he could not understand why the surgeons in Pittsburgh didn't at least open him up to verify what was going on in his spine and to see if it was treatable, he was also perplexed as to why none of the hospitals ever thought to do spinal imaging until we suggested it and that spinal images should have been taken immediately after his fall. He said that was a "head scratcher." At any rate, they performed the exploratory procedure on January 15th, and took a biopsy of the growth in his spinal cord. After "opening him up" the surgeons agreed the "mess" in and/or on his spinal cord warranted a second opinion by a team of neurosurgeons at UNC Hospital, so they transferred him by ambulance the next day. The post-op pain he endured was heartbreaking. Screaming out at times when the staff would attempt to transfer him from the bed to the gurney and back. He said the ambulance trip from Wilmington to Chapel Hill was a nightmare and that he thought he would die just from the pain alone. 

 

Once he arrived at UNC, they immediately focused on his post-op pain control. That took a couple of weeks. During that time they took several images of his spine and then decided to perform another surgery. I knew that it was a ast ditch effort to try and diagnose this spinal anomaly, but I also feared for him having to go through this pain all over again. He hesitated to have this procedure because he was just so sick of the pain, and knew that it would probably be more painful that the exploratory surgery. But after discussing it with several physicians, including his favorite, Dr. Cleveland from Mercy, he decided to move forward with the surgery. After the surgery, the surgeon explained that this was not exactly a "syrinx" and that Presby may have thought that it looked like one based on their imaging only, but after seeing it up close and personal, it was something else. Still not 100% sure of what exactly to call it other than a "mess," the doctor (trying to explain in terms that most non-clinical people can understand) said it was a cluster of tissue growth, possible cyst or cysts, compression, blockage, etc. He performed decompression, along with some other procedures, but told us not to be too hopeful that he'd be able to walk again because there was a lot of damage that resulted from this not being addressed sooner (he told us verbally that he did have a  feeling that this was caused by something that began forming after his fall and subsequent brain bleed, or even a direct blow to the spine that wasn't imaged. He also said that this was all probably preventable had the right imaging been done at the first and second hospital stays. He [like the surgeon at New Hanover in Wilmington] was dumbfounded as to why a spinal MRI or CT had never been taken, given all that was going on in his abdominal area, in addition to them all knowing he'd fallen). His reaction when I told him my Dad had not received spinal imaging until 3 months after his fall... "wow, that's a shame." I said "yes, it is shame...it's also a shame that he fell in the first place. And it's a shame that he'd gone 3 weeks with no nutrition and lost 40 pounds and ended up with a stage 4 bedsore. It's all a shame." And he just shook his head and told me to be hopeful, that maybe at least he'd have some pain relief, and that he'd done all could do in that surgical session. 

 

The post-op pain for the main surgery at UNC was not nearly as intense as the post-op pain from the first exploratory surgery, or even from the overall pain leading up to the surgery. So there was immediate relief. He barely had to take any narcotic pain medication, whereas, before the surgery, he was taking Vicodin, Demerol, Percocet  you name it. He started inpatient rehab and did that for a few weeks and then was transferred to sub-acute rehab (another nursing home) for about a month. The rehab at both was typical post-op rehab, nothing really focused on walking, but rather, strengthening and stretching. Once he was discharged from the skilled nursing facility, he started home health, and then eventually, it was just him and me again (as far as assistance with activities of daily living were concerned). At discharge, there was no clear indication that there was any improvement in bowel or bladder, or walking; however, he almost never complained of pain. Just the occasional spasm here and there, which prior to the surgery, spasms happened all day long. 

 

Fast forward from discharge from the last nursing home (total hospital and rehabilitation time lasted from Christmas Eve 2018 until 4-17-19) and it is now October 2019. With only his own form of exercises done in the home as well as sitting in the wheelchair at the gym and doing his arm strengthening exercises, he has improved significantly. He is practically pain free and has cut his muscle relaxer medication down by 66%. He has totally cut out the nerve pain medication! I picked up a used walker at the thrift store and he attempted to stand up, and voila! He stood up! He is not able to straighten out his legs but he can move them, and he can pick one up and move it forward and set the other down. Over the course of a few weeks he started practicing on his own with the walker and is now able to take about 20 steps forward and backward. 

 

Based on this improvement and progress, we took a trip back out to UNC to see Dr. Cleveland, and she was thrilled (and a little shocked) to see his improvement. She wrote him an order for 8 weeks of spinal physical therapy where they will do therapies to what they did at Mercy, rather than just typical PT, which clearly was not what he needed. She also suggested that he have injections of Botox in his leg muscles to help straighten them out. So as of the time that I write this, we are now officially set up for 16 sessions of specialized physical therapy. 

 

To be continued....