It’s not always the tears that measure the pain.
Sometimes it’s the smile we fake.
As I sit here, I’m at a loss for words. I know I need to do an update on Kelvin, and I truly believe that his close friends and family deserve an update, but I’m paralyzed. So much has happened in the past 10 months. Where do I start?
“He is the longest surviving burns ICU patient in Milpark Burns ICU history.”
One thing has become blatantly apparent over the past 10 months, and that is that Kel is an absolute anomaly. He is the longest surviving burns ICU patient in Milpark Burns ICU history. He is being referred to as a case study for student nurses and has left the doctors scratching their heads on more than one occasion. And this awareness does more to break my heart. My son should be known for so much more than this, for this accident, and his extreme wounds. My son is more than what he his going through, and if it takes the rest of my life, I will ensure Kelvin is not defined by what has happened to him but will help him to rise above it.
As it turns out, awareness is a dangerous thing, simply because of the emotion attached to it. For instance, I am aware that people continue to regard Kelvin as he was before, you know, the young, up- and-coming paraglider, the squash champ with his happy-go-lucky, devil-may-care free spirit. I find this fascinating, incredibly annoying and heart-breaking all at the same time.
“…people sometimes respond to this reality like he just needs to be patched up and life will continue. If only it were that simple. But it is anything but simple and life will never be the same.”
I find myself asking if people realize that you cannot go through a life-changing event without having your life changed. How do you tell them that the Kelvin of 10 months ago is not the Kelvin that will eventually come home? The reality is I have lost my son, my family has been torn apart, I am broken, and people sometimes respond to this reality like he just needs to be patched up and life will continue. If only it were that simple. But it is anything but simple and life will never be the same.
Let me paint a picture – one that provides insight to what lies beyond the photograph you see. A burn is the most extreme form of injury anyone can experience. Burn injury of Kelvin’s kind is actually classified as a disability. Will Kelvin be disabled? Yes, he will. That is the reality, and the final outcome will be the degree to which he is disabled, not only physically, but mentally and emotionally.
Occasionally, I catch a glimpse of the old Kel, the chirpy, bubbly, quick-witted kid I have spent 21 years loving, nurturing and fighting with. Sometimes we play music, and he sings along.
Another picture is called for. Kel is still on the ventilator. It is 10 months down the line and the doctors are unable to remove it because of infections. His lungs are full of fluid, the grafted skin has no elasticity and is pulling tight across his chest, so his lungs cannot expand, and he cannot breathe so the vent stays. Until the vent is removed he cannot speak, so our lip-reading skills are on point. There is some humour in the moments when we have an argument and you can see his meaning from his eyes and his mouth and his arms without hearing a single word.
Ten months down the line, and the skin grafts are the least of our concerns. Due to long-term hospitalization, medication, ventilation and infection, Kel’s lungs and kidneys are damaged. Again, we are talking degrees. We knew that his left calf muscle was removed, but I was at that stage unaware of the chunk of muscle they had to remove from his left hip. He is suffering from myoclonic jerks and his tummy is not absorbing food like it should. Physically, Kel is still a critically ill child. I think people tend to lose sight of this.
We have on a few occasions managed to get Kel into a LazyBoy chair for a few hours, or standing on the tilt table for 20 minutes or so. To aid recovery, he needs to be mobilized. The human body was not designed to spend 10 months on its back. To clear his lungs, he needs to be upright.
“He is in agony. His bum has not been grafted. Burn recovery is at its best inhumane. It’s no wonder Kelvin continues to be traumatized by the treatment.”
So, where are we 10 months from that fateful day?
Kelvin’s life still hangs in the balance, he is still considered critical. The path has not become easier in any way – the challenges just differ from day to day. We have become quite adept at tending to him. We saw him crash about once a month, with his kidneys no longer working, forcing him back onto dialysis, or his lungs failing to work on their own, or his entire body being just too weak to carry on. In December 2018, he crashed in theatre and had to be resuscitated. He remains on life support, is still being fed through an NG tube and has a drain in his lung. He is on four antibiotics to fight numerous infections in his blood and organs.
There is no indication when he could be moved to a rehabilitation centre.
I do, however, believe there is light at the end of the tunnel. I just don’t know how long the tunnel is.
Kel has a hell of a story to tell and I cannot wait for him to tell it, though I believe it will take a good few years for him to reach that point emotionally.
“He is staring down a lifetime of recovery, a lifetime of reconstructive surgeries, psychological therapy, neurological support and rehabilitation.”
He has to learn how to walk again, hold a spoon, fasten shirt buttons, kick a ball, climb out of a bath. It is going to be like tending to a 6ft4” 3-year-old. In all probability he will come out of ICU on oxygen and using a walker.
Due to the infections, Kel is still not allowed visitors, though if he asks to see someone specifically, I do arrange it with the unit. A lot of people have asked to see Kel. The reality is, this is about Kelvin. If he wants to see people he will ask me to arrange it, but it must come from him. Please keep your messages and posts on social media and WhatsApp coming through. I read every single one to him. In your own special way, you do make a difference.
This remains a most difficult journey, as it would be for any parent. I am constantly on edge, wondering what sort of day my child is going to have, or if I will get a message from the hospital. I try not to think about what was. That is gone. I see Kel everyday. I’ve seen his wounds. I know my child. We simply cannot afford to look back. There is nothing left back there. We, the family, need to embrace and adjust to the new, whatever that is going to be.