My father has been struggling to recover what was initially thought to be an acute episode of pancreatitis that turned into a series of complications and misadventures, most of which have not been diagnosed or explained with any certainty. To this day he remains in a wheelchair, with no answers. Although we are still pushing forward, trying to get to the bottom of what really happened, and pursuing ways to make his life easier, and possibly see him walk again. It's been a slow process, but it's a forward moving one... which is more than ever thought we'd be experiencing over 1 year and a half later.
The story below outlines the timeline of events from 3-17-19 to present (latest update 10-2-19).
On 3/17/18, Bob presented to the ER at Jefferson Hospital with abdominal pain and was admitted to a regular floor. The next day, he fell and sustained a head injury that, at the time, was deemed to have caused no resulting damage; however, he was transferred to that hospital's ICU for "preventive” but unclear reasons and returned to a regular floor on day 4. On 3/22/18, he was transferred to the ICU at Presbyterian Hospital. Brain scans done at this hospital revealed a sub-arachnoid hemorrhage (a brain bleed). It is believed that the fall was likely the result of the adverse reaction that he had to the IV Ativan (that was mistakenly administered because at some point, the physicians were under the impression that my father was going through alcohol withdrawal) [he hasn’t had a sip of alcohol, beer, wine, etc. since 2003] ). Along with the sub-arachnoid hemorrhage, his body was also still trying to heal from the inflammation of the pancreas, which was not necessarily acutely life threatening in and of itself, but significantly compromised his immune system. But that wasn't the extent of it. There were other problems arising that were also later thought to be caused by something other than the pancreas, other than the head trauma, and other than the weakened immune system. These "complications" ranged from multiple infections of "unknown origin" and dysphagia (inability to swallow); to aspiration, pseudoaneurysm near his pancreas, MRSA pneumonia, prostate and bladder issues, 2 blood clots, dangerously low hemoglobin levels, delirium, joint and muscle pain/weakness, immobility, and a stage 4 decubitus ulcer (highest stage).
In early May, he was transferred to a skilled nursing facility where he was expected to be rehabilitated enough to begin walking, and after 4 weeks of little to no progress in that area, and after pleading with the attending physician to refer him to neurologist (because his legs were obviously not "deconditioned," there was clearly something going on with his nerves/spinal cord given that he could not stand, walk or use bowels/bladder). Lo and behold, the imaging showed some sort of a "cyst" inside of his spine and we were told to go back to Presby ASAP because the cyst not only looked ominous, but it was something this neurologist had "never seen before."
So back to Presby he went, on July 4th. After waiting in the ER for 17 hours (it was July 4th and Presby is a trauma center; hence, the 17 hour wait. And you can imagine some of the things we saw while we were waiting). Not to make light of the ER situation though, because he was in severe pain the entire time, and he still had this stage 4 ulcer on his backside. Imagine having to wait in the ER for 17 hours, unable to move, in pain, not given much attention at all, nothing for pain [or anxiety at this point- having to lie there so long waiting] while having to worry about "staying off your bottom." Needless to say, it was not an easy wait. They finally admitted him and ran more neurological tests, which took another entire day for a spot to come available. A CT myelogram and MRI's- were done - only to decide that they couldn't do anything with this cyst, because it was "too far gone" and had done "irreversible damage" to his spinal cord and nerves. Not happy with this neurosurgeons advice (and an obvious lack of interest in my Dad's case- probably because the main surgeon was swamped with younger people with proven injuries), I mentioned to the attending physician our dissatisfaction with Presby physicians from day 1, seeing as though they clearly caused the stage 4 decubitus ulcer but not having taken the appropriate measures to prevent it (not turning him more than 1x per day, if that... and not administering any form of nutrition for 3 weeks resulting in his weight plummeting to under 100 pounds)... at which point they began to treat him like a VIP, and then referred him to the Spinal Cord Injury Rehab unit at Mercy, so he was transferred there 6 days later.
At Mercy, he participated in PT, OT, and ST 3 times a day. He gained some weight, and they took good care of his bedsore. They ordered him a custom-made wheelchair and before you knew it, he was zooming all over the place there. Going to the gym, lifting weights, socializing with anyone and everyone. He was discharged on August 13, and we were able to drive him to Raleigh to stay with me while he continued outpatient PT and had home care to continue working on the wound healing, and other things that a "paraplegic" might have to deal with.
The initial plan was to continue rehab in Raleigh and follow up with a spinal surgeon in a few months. The spine doctor who saw him at Mercy relocated to Chapel Hill, NC and he was able to see her in November so that was pretty cool. She referred him for more PT, a neuro-urologist, and a neurosurgeon to check the cyst. Over Thanksgiving, he had a slight setback with his wound. Too much time in his wheelchair + an infection compromised his immune system, & his wound became angry again. The home health agency had sent the wrong wound care treatment, & that made matters worse. That all took a week or so to clear up and we had to reschedule the neurosurgeon appointment for January.
One year later...
[This story only allows 1000 words so please read my latest updates beginning October 2, 2019 for information on what's happened between August 2018 and present. It's good!]
