Recovery and new research

There have been so many updated in such a short period of time but I will try to touch base on all of them. The hospital journey jeff has been on, has been full of unanswered questions and trials as he has made his pushed through to recovery. Jeff was showing improvement everyday with little to no interventions from the drs and the general consensus was that these issues with temperature regulation, cognition, decreased heart rate, seizures, swallowing, balance, speech (did I miss any?) they are all due to delayed effects of the radiation. No one really knew what was going on but drs like to give answers even if those answers don’t totally make sense. I guess patients like to hear something other than some of the smartest people in the province have no clue what’s happening to you. We settled on not knowing and started focusing on the future. We requested Jeff to bee seen by the rehabilitation drs at the Glenrose and on Monday morning they gave us the good news that Jeff would make a good candidate to inpatient rehab lasting 3-4 weeks. I was so happy that Jeff was going to receive those supports and so happy I didn’t have to try and fight for rehabilitation from home. Monday was also Jeffs swallow test. When Jeff first came to the hospital I informed the drs of some previous scans he had had that showed signs of possible aspiration and because of Jeff’s weakness and because they still were unsure as to what was causing all of his symptoms, they didn’t allow him to eat. The days went on and things didn’t resolve so they gave him a feeding tube. It wasn’t until a few days later that they put a camera down his throat as a way of seeing if things in his throat were working properly and they also wanted to make sure there were no masses in this throat preventing food from going down. They found no masses but did notice that there was a delay in his food as he swallowed which put him at high risk for aspiration. They restricted all oral intake except ice chips. The last 4 weeks have been difficult for Jeff not being able to eat but on Monday they took him for fluoroscopy and were able to see a live x-ray of the food they gave him and how he swallowed. It was super interesting to watch and he did great on 90% of the exam. It wasn’t until they gave him a pill with water that they noticed the pill go down the right way but some of the water made its way down his trachea. This means that the speech pathologist allowed him to eat but with some restrictions. He can have easy to chew solids and thickened liquids. It was a joyous occasion to hear he could eat again and this morning he had waffles and an egg! This afternoon the feeding tube came out and now he’s on his own to get his nutrition in with meals. It’s a slow process as his stomach isn’t used to real food but its good to see him without that tube in his nose. Yesterday was also a big day in terms of diagnosis’s and the internal medicine team came to talk to us about the results of the PET scan they did last week. This scan showed signs of autoimmune encephalitis which is a disorder in which antibodies produced by our bodies to protect us turn and start attacking healthy cells (his brain). This disease is rare, hard to diagnose, and seriously cutting edge. It wasn’t even until about 10 years ago that is started showing up in the research. This is incredible and unnerving news. So happy to have a differential and so terrified for what this could mean for the future. The treatment they are going to try with Jeff is IVIG which is intravenous immune globulin. Google it. It’s super interesting. This IVIG was started today and will last for 5 days. When the 5 days are up, they will reassess his cognitive function and physical abilities and compare the results to the test they did today. We are very excited to see what this treatment could do and will patiently await the next 5 days.