A few days ago, Brendan Bjorn developed a new pressure sore in the same area as his old one. Yesterday, the skin broke down and it is now an open sore. Another open sore. I am devastated. It has been just over 2 years since he first developed a pressure sore at his left IT (ischial tuberosity) point. It has been a battle ever since. 

See the blue highlighted areas in the below photo to understand where it is and why it’s such a pressure point. 

I called the Public Health Nurse out last week to look at the sore and she is going to contact the Tissue Viability Nurse. Tomorrow I will have to ring her and let her know the sore has opened, just as we feared it might.

Over these past 2 years, the sore has left him bedridden for months on end. He hasn’t even been able to attend school for the past 2 years. And, as he still doesn’t have a new wheelchair seat in which he can safely sit since his spinal fusion operation, he hasn’t even been sitting directly on that IT point – yet it has again broken down. Despite the side-lying, despite the tender care provided, this new sore has developed and I can’t understand why when I’ve done everything possible to prevent it.

…and so, I worry. 

My mind is racing with the dreaded what-ifs. What if this is his new normal? What if he’s never going to be able to sit longer than a few hours at a time, otherwise being relegated to being bedridden. What would that mean for my family, when we are already fighting for in home respite without the restriction of not being able to leave the home due to the Loco Parentis policy? What will that mean for my emotional and physical health, which I am already struggling with as a result of being housebound these last number of months? And what of Declan’s well-being, also being housebound as a young, growing boy?

…and so, I worry. 

Trust me when I say I’ve heard everything there is to say about how worrying is a waste of time and energy. As a former professional therapist, I have surely said similar to former patients as well. But…but…but….this is my son. This new development is potentially life changing for all three of us in my little family and as such is terribly frightening to me.

We need more freedom, not less.
Brendan Bjorn needs more healing, not more challenges.

…and so, I worry.