Declan’s Dairy

It’s July 12th, the day after Declan had finished year 10 and we’re finally on our way to Southampton to go on our holiday that had been planned for well over a year. Twenty-four hours later Declan is in intensive care in a French hospital and I’m being told he has pneumonia, hypothermia and acute liver failure, and is in need of a liver transplant, but he can’t have one as he wouldn’t survive the surgery.
The doctor who thankfully is fluent in English, is looking at me with absolutely no hope in his eyes, all the nurses are coming in and out of his room, trying to Speak to me but I haven’t a clue what they are saying.
My son is laying there all swollen, yellow and unconscious and all I can do is hold his hand and pray. The liver specialist has now been and informed us how dangerously poorly Declan’s liver is and the only hope is that it starts to repair itself, something that would be difficult enough for a healthy person. My family have now travelled through the night to see Declan, for possibly the last time. I have no idea how this could be happening, I’ve read all the books on Duchennes, been to funerals of boys who have lost their life to this horrible condition but never, never has the liver been mentioned, they must have it wrong, this isn’t the Duchenne path?
How can a mild chest infection that I was told he had only five days beforehand, and told to take him on holiday as it would do him good end up like this. What about year 11, what about the end of year prom, what about all his hopes and dreams, how can I tell all the people that love him that they will never see him again?
Finally I’m given some good news, his liver enzymes are starting to come down, I jump with joy but the doctor quickly brings me back down to earth with a bang as she tells me there still way over 6000 and until they are less than 150 he’s still critically ill. My life for two weeks is a room with a bed, machines, my chair and my son wired up to machines with tubes coming out of his neck, arms and feet.
I sit in the chair, sleep in the chair, pray in the chair, I read, but can’t leave him – I don’t want him to take his last breath without me.
Two weeks pass and against all odds Declan is out of danger and allowed to fly back to a English hospital by air ambulance, have all my dreams been answered…yes, am I the luckiest person alive…certainly. Declan remains on a high dependency unit for a further two weeks where day by day he gets stronger. As we’re about to leave the ward to venture home, back to our own beds and no more hospital food the doctor catches me to inform me Declan now needs night time ventilation, a machine that will pump air in and out of his lungs to replicate the breathing of a healthy person, and an appointment has been made for the following Friday to be fitted up for it.
What a bitter sweet day, I’m finally taking my amazingly strong son home, but we will now need a machine to help him breath at night. I knew this day would come but until the liver failure he had been doing so well. That was four weeks ago now, Declan is slowly getting used to wearing a mask at night with the whooshing sound of air, backwards and forwards as he tries to sleep. A large part of Declan’s confidence was left in France, he now worries he won’t wake up every time he goes to sleep and if the truth be known, so do I.
We really do have to make every day count now more than ever, as we’ve seen how quickly things can change, how quickly life can drain away from someone you love. I’ve been lucky this time, but as my heart repairs from the almighty hit of being told my son won’t make it through the night and watching the life and spirit in his eyes disappear, I know now only too well what the future will bring and I’m in no way ready to finish my journey with Declan.
The picture above left is the amazing staff at the intensive care unit in France.