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Bob's Journey to Wellness
Apr 1, 2018 Latest post:
Jul 25, 2018
Original Story (posted 3-30-18). Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Although the site posts begin on March 30, Bob has been struggling to recover from an acute episode of pancreatitis with multiple complications that began on March 17th. What was initially thought to be something that could be treated rather quickly, resulted in a series of complications and misadventures, most of which have not been diagnosed or explained with any certainty, even after 30 days of examining, sticking, analyzing, scoping, imaging, intubating, infusing, and ICU'ing. In fact, on day 30, the attending physician used the term "diagnosis X" to describe the discharge diagnosis.
Timeline and Recap (updated 4-30-18). 3-17: Hosp #1 ER, admitted to regular floor 3-18: Fall, transfer to ICU hosp #1 3-21: Improved, transfer to regular room hosp #1 3-21: Scope procedure, hosp #1 3-22: Grave results of scope, transfer to hosp #2 ICU (further explained below). 3-26: Improved, transfer to hosp #3 regular floor 3-29: Aspirated, transfer to ICU hosp #3, intubated 4-6: Improved, transfer to hosp #3 regular floor 4-10: Worsening labs results, blood transfusion 4-17: Discharged to skilled nursing facility (still unable to eat/walk) 4-30: Currently receiving physical, speech and occupational therapy at the skilled nursing facility. Follows up with a vascular surgeon in one month to check the status of the artery issues.
3/17/18 Hospital #1. Presented to the ER 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 hospital #2 (based on results of an endoscopic procedure mentioned below). Brain scans done at hospital #2 revealed a sub-arachnoid hemorrhage (a brain bleed) that the scan at hospital #1 apparently did not show (possibly because it was done too soon after the fall). The fall was likely the result of the adverse reaction that he had to the a IV Ativan that was mistakenly administered (more on this below). 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, which he still has to this day), to aspiration, 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, which I believe is the highest stage (these last three problems are all still active as well). Most of these problems, while not expected to arise just from an inflamed pancreas, were somewhat explainable based on the chain reaction of events stemming likely from the head injury, regardless of the underlying reasons. But there was one other very serious and unexplainable problem that not a single physician (at any hospital, in any department or ICU) could explain or determine the cause of...
Dad's abdominal CT scan showed extensive damage to the arteries in and around the bile ducts and pancreas area. They used so many "D" words that my head was spinning. Damage, destruction, dissection, disintegrating, dilated, and (the one that still haunts me)... deep well. But no real theories as to why or how this vascular mess might have come to be. There were plenty of "possibilities" tossed around, but not a single definitive answer from anyone. When hospital #1 transferred him to hospital #2, the vascular surgeon told us all to sit down before he explained the seriousness of the abdominal artery problems and advised us to hope for the best but to be aware that the damage to his arteries and any surgery, if surgeons are willing to "go in" could be fatal. On the day of discharge from hospital #2's ICU to hospital #3's regular floor, as well as well discharge from hospital #3 to the skilled nursing facility, the attending physician's states that they are/were baffled by the extensive damage seen in his abdominal vasculature, but were just as surprised of how most of it seemed to have improved. They both also mentioned the scope test that had been performed on Mar.21, speculating that possibly a "bleeding injury" may have occurred during the test, but could not be sure if he came in to the ER with the vascular problems (and that was the actual source of the problem and pain) or if the scope may have caused or contributed to the problems. But both physicians made it clear that they were not laying blame anywhere or on anyone, and that this would not be documented in the medical record. My interpretation of this is that the physicians' gut feeling (especially with this being a teaching hospital with teams of specialists) was that an injury did occur during the scope procedure that could not be proven; however, they felt strongly enough about this theory to at least mention it to us. Off their chest. On the other hand, not sure that damage from an endoscopic procedure could have created such a "hot mess" of all those abdominal blood vessels.
During this 30 day experience, we focused on doing whatever was necessary to keep Dad alive. Prayers... and staying in the know at all times with what was going on at hospitals #2 and #3 (#1 was a brief tornado that snuck up fast and did a lot of damage but we didn't realize what had even really happened until #2). He had so many things going against him and continued to get hit while he was down. So much so that we nearly lost him three times. Due to the dysphagia caused by the head injury and poor supervision of his initial start of (pureed) foods on Mar.29, he aspirated and ended up back in the ICU and placed on a ventilator, with pneumonia. Due to bleeding he could not be on the anticoagulant needed to dissolve 2 blood clots. Due to low sodium, he could not be given the fluids needed to treat his dehydration. Due to the head injury, they would not give certain pain meds that could worsen his delirium. Due to the adverse reaction to the IV Ativan (hospital #1), he could not have the much needed diagnostic MRI (because it was thought he'd not be still enough in the MRI machine); therefore, instead, he was given the scope (the one that may or may not have injured the pancreatic blood vessels). And due to the delirium and the dysphagia (caused by the head injury that hospital #1 had not yet even realized), they would not do the MRI under sedation because they did not want to have to intubate him for such a procedure. His overall condition was an enigma from day one, and decisions were made based on his current status at the time, not on underlying causes. Not only that, but somehow the initial Ativan protocol (that subsequently lead to the delerium, agitation, and ultimately the head injury) was initiated based on a differential diagnosis of chronic pancreatitis and alcohol withdrawal (1.. Dad doesn't drink, 2. He was never diagnosed with CHRONIC pancreatitis, even though he had an ACUTE episode 15 years prior that was also not due to alcohol).
He basically was a palm tree being slammed by both sides of the hurricane, trying to dodge the debris before, during and after. What started off as a rainstorm, brought on a tornado, and then turned into a Cat 5 hurricane. There was not much time to think about anything other than saving his life. Now that the winds have calmed, what we're left with is a lot of rebuilding, and a lot of pieces to put together.
Currently, my Dad is at a skilled nursing facility trying (hopefully this is not the tropical depression) to regain his strength in swallowing and in his legs so that he can resume eating, and walking. He is making progress- a little each day. And he wants to get better and get back to independent living. It's going to be a long road, but he's made it this far and I believe that with a support system, a good clinical team helping him and continued faith, he'll stay motivated to keep getting stronger every day.
Your prayers and continuous words of encouragement have been so appreciated throughout this ordeal. And also, thank you everyone who called, visited, gave Linda a lift into Oakland, sent cards/flowers, offered/brought food and other necessities, and offered a place for my sister and me to stay. Every little bit of support helped, and is still helping get us through this whirlwind.