Panadol, throat lozenges and antibiotics
Rory developed a cough last Saturday. By Monday it was bad enough to keep him home from school. He has not been back all week. I took him to the doctor on Wednesday and his cough was quite moist and his nose was running. He was prescribed an antibiotic. Normally I would wait and only give it if he wasn’t recovering. This time I have given it as I have been quite concerned. I asked the doctor to give Rory a blood test to check his lymphocytes as this is the second viral respiratory illness he has had in two months. They have identical symptoms. I wasn’t surprised when his lymphocytes came back below normal range. I am waiting advice from Starship. It is likely he will need to resume the IV infusion of antibiotic Pentamidine once per month to protect his lungs from pneumonia until his lymphocytes recover. In 11 years Rory’s body has been given 10 cycles of chemotherapy with five toxic chemotherapy agents. It is not a surprise his immune system is faltering. In the middle of the week Sean came down with the virus and yesterday Caitlyn succumbed so it must be reasonably potent. Colt and I are currently well but I had a sore throat when I woke this morning and I am feeling low energy.
When Rory is unwell his life and mine fold like a pack of cards. There is no school, no out of school activities i.e. volunteering, Riding for the Disabled, gym and the tri-monthly Canteen event. I am unable to go to work as I have to stay home and care for Rory. I try and work from home but there is the ‘distraction’ of caring for him and fatigue from lack of sleep as I get up to him at night. I have to manage his stress dosing with hydrocortisone very carefully. Too little means his body is unable to recover and too much weakens his immune system. With Sean unwell I also have to pick up the slack around home. I am very thankful during a week like this that Taranaki Regional Council is such a great employer and my Manager Steve is so supportive.
This week I had a meeting with Yvonne from Manawanui to set up Rory’s Personal Care and Household management budget for 2021/2022. I also met with SENCO David and Tanya from Deaf Aotearoa to explore and progress what will fill up Rory’s time at school in 2021 and options for him out in the real world in 2022.
Happy Easter. Everyone in our home is looking forward to the Easter bunny’s deliveries tomorrow and the extra hours sleep. Happy Birthday Uncle Guy xox