My stepson, Jason Pearman, passed away yesterday afternoon (Thursday, April 28th), at home. He recently turned 32. For those of you not familiar with him, he was a spastic quadraplegic from birth. His official diagnosis was Cerebral Palsy.
We have been struggling with recurring decubitus ulcers (bedsores) on his hip and legs. We have worked with the wound-care physicians for the past several years in our efforts to deal with them. Sometimes they would improve, even healing over completely at time or two, but always they would recur.
Jason had suffered a severe case of Scoliosis (curvature of the spine). Shortly after his mother and I married, he was treated for this condition via a Spinal Fusion. Steel rods were inserted alongside his spinal column, and the Spine was fused into a single bone for most of its length. This corrected some of the curvature, which had become life-threatening, but did not render it completely straight. Due to this remaining curvature, he had a 'favoured' side to lay on, which made it difficult to keep him off the hip ulcer. It also made it difficult to keep the ulcer dry and sanitary, resulting in recurring infections.
About two years ago, the ulcer on his hip began to grow and larger and deeper, and nothing we could do seemed to help. Antiobiotics, both topical and internal, no longer worked to stave of the infections. The wound-care clinic diagnosed it as Methicillin-resistant Staphylococcus aureus (MERSA). He was placed on a long-term antibiotic regimen, using a variety of anti-biotics over several weeks.
We were later advised that the infection had moved into the hip bone, resulting in a condition known as Osteomyelitis. We traveled to St. Louis to see an infectious disease specialist, who advised us against continuing any anti-biotic treatments. The infection, we were told, was something with which we would have to live. We were advised to continue the wound-care treatments, sans anti-biotics. There were surgical solutions to treating the Osteomyelitis, but Jason was judged to be too frail to be considered a candidate for them.
On the return trip from St. Louis, his mother and I decided to begin a regimen to make him less frail, as we continued to try to lessen the severity of the ulcers. We increased his caloric intake to the maximum he seemed capable of withstanding (which amounted to about 60%-100% more than his prior intake - a steady diet of Pediasure. We switched from Pediasure to Ensure, and added protein substitutes, initially liquid, and then powdered. He showed a gradual weight gain, and his complexion began to improve.
At the same time, we began to try a variety of alternative treatments for his decubitus ulcers - Coconut Butter, Manuka Honey, etc., with varying levels of success. I cannot say that the Coconut Butter had much effect, but we did not have him on that treatment long before shifting our focus to honey. At first, we used standard honey, of which we had a jar that had crystalized into sugar. The ulcers began to show improvement with the honey treatment. We ordered Manuka Honey (from New Zealand) online and, upon arrival, switched to using it. It appeared to be effective, but no more so than the crystallized honey we had been using. The wound center advised us that they had medical-honey bandages, and we switched to them, with about the same results.
Jason soon suffered from dehydration, however, due apparently to his protein increase without our having increased his hydration sufficiently. He was hospitalized for a week, during which he was placed back on anti-biotics (the infectious disease specialist we visited in St. Louis is not affiliated with that hospital). While there, we discussed his caloric and fluid intake with a dietician, and were given specific targets for both.
He seemed on track after dismissal from the hospital, continuing to gain weight. although his energy level seemed less, and his urine output was irregular. On Holy Thursday, he took a strange turn. His urine output stopped, he became extremely lethargic, and his breathing became shallow and irregular. He no longer vocalized, and appeared oblivious to both sound and sight stimulation. He did not, however, appear distressed, showed no signs of pain or fever. We opted to keep him home and treat him as best we could.
He continued for a week, with no improvement, though little decline. His digestion slowed, such that, by week's end he was back on the same caloric intake as he had been before we went to St. Louis. I stayed hom with my wife and him on Wednesday, fearing the worst. Yesterday, I remained home until my mother arrived at noon. I went in to work for a short while. At 4 P.M., my mother called to say that Jason had passed.