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Apr 16, 2017 Latest post:
May 20, 2017
My mom was diagnosed with something called osteomyelitis in her spine on February 27, 2017. I knew something was not right when mom had asked me to come out and help her with some chores around the house the weekend before - something she had never done before. After falling because of extreme pain when she was walking into the house after returning from a CT scan that day, I decided I needed someone to read the scan immediately. I drove into her clinic with the HIPPA forms signed and later that day we found out she had a fracture in her back, something they thought was caused by either osteoperosis or a tumor. We went to St. John's Hospital where they diagnosed her somewhat amazingly with osteomyelitis (OM), which can be hard to diagnose, which is an infection of the bone. She also had discitis (inflammation) between her T11 and T12 vertebrae, and an abcess that was pushing against her spinal cord. She was taken by ambulance around midnight that night to St. Joe's where they have neurosurgery. We were optimistic and determined. We felt the infection could be treated at that point. Neuro was excited that she had movement of her legs and was not paralyzed. Apart from the agonizing pain in her back, things seemed to be on a solid trajectory.
After eight days at St. Joe's, she was discharged to a Transitional Care Unit (TCU). This was a very stressful time when the doctors were trying to figure out how to treat the infection and we were waiting to see if she responded to the antibiotic. In the end, they discovered it was staph which is something generally easily treatable. To this day, they have no idea how she contacted staph - usually a spine infection like this would only occur as a result of a back surgery, which my mom has never had. She has never even been to the hospital except to have me. She started IV antibiotics and we settled in for a six-week course. I spent a weekend driving around touring TCUs and settled on one close to our home in Shoreview called Waverly Gardens. After a bit of a battle, we convinced mom to accept the TCU, and she settled into a very posh TCU all things considered.
While she was well cared for at the TCU, pain control proved illusive and her nausea was severe. She struggled getting into her back brace and with mobility as a result of the intense back pain. To make matters worse, her 3-week post-hospital discharge back x-ray showed worsening of the back despite the 3-week IV antibiotic course. Mom gradually ate less and less and stopped eating altogether. She fainted several times in her wheelchair. Early one morning her nurse called at 4:30 am concerned about mom and recommending she go to the ER due to a low-grade fever and other symptoms. Mom refused. I drove to the TCU. She still refused. We called 911 and eventually went back to St. Joe's for nine more days.
They drained a liter of fluid off mom's lung and first thought she had pneumonia, but later determined the fluid was actually caused my malnutrition. Her protein levels were so low which can cause that and also render the antibiotic less effective. After several days in the hospital, we had a care conference with her hospitalist and palliative care and we decided to try a feeding tube for a limited duration (weeks) instead of immediately pursuing hospice. Her caregivers felt this was the best approach to see if she could make a final push to help fight the infection. Her feeding tube was put in on Wednesday, April 12. Mom was then transferred to one of only two long-term acute care hospitals in the state, Bethesda, on Thursday. Here she can be seen my the same group of infectious disease doctors who had followed her both the first and second time at St. Joe's. She also has a hospitalist following her as well as a social worker, palliative care, RN case manager, and wound care. She is what one nurse at Joe's described as medically complex as well as a complex patient (who, it turns out, is highly sensitive to pain).
Mom will be at Bethesda for the next several weeks. We are focused on trying to support her to move as much as possible and start to eat, even with the feeding tube. And, of course, giving her as much love and support as we can. Her doctors and care team have advised us to continue to be prepared for quality of life decisioning, and feel we will have a better sense of next steps in the next few weeks. I have taken a leave of absence from work and Dave's mom is staying with us to help support our family in the near term. I'll continue to update this site to share new information.