Monday 12th July – Walls of Love

Ladies and Gentlemen – I am utterly delighted to report that after 39 days in the Toronto General Hospital, Kenny D was released today and aloud home with me. It is pure joy to watch him rediscover simple pleasures – his first bath, a haircut, good food and the peace & quiet of our wee apartment. It is a privilege to be with him in these moments. While we celebrate our departure, we take with us the incredible care Ken (and I) received every hour of every day. I will not give you names because if I did so, I would have to list every last doctor, cleaner, nurse and therapist. They caught Ken time and time again, ensured I understood every step and made me feel part of their team. They made the experience bearable for the boys and welcomed our friends & family where ever possible. They built a trust with us that sustained throughout.  Needless to say, they do not do their jobs for money. They do it because it is their calling. One of the nurses told me she gives so much of herself at work, she has little left beyond the doors of the hospital and yet, it is enough for her. I believe they have changed me. I really want to do more and be better as a result of being with these incredible people this past month.

For those of you not on Facebook, I posted this message a few days ago –

“I have to tell you this…..
However simple or extravagant, every ‘Go Kenny D’ photo you send us truly makes a difference. It motivates Ken and I, entertains us and fills us with gratitude. It excites our boys and reminds them every day of the extraordinary support we have all the way around the world. The nurses and hospital staff enjoy them too. We have filled his room with prints of all the pictures. They tell us it is the most colourful room in the whole hospital and have used the description “walls of love”.
Thank you everybody!”

Ken and I were talking about the pictures today. He explained, in the days he was waking up, he would take his time and study each of the pictures. It took hours and days to piece together the images and understand them. But he stressed how much the process helped bring him back into the present. We have spoken to the hospital team about this and they plan to encourage other families to follow what you guys did for us. Just the other day they told me another patient’s room had been filled with drawings and pictures by a man’s children on the back of this suggestion. So you are not just helping Ken and I – it is being passed forward.

Having taken the pictures from the walls of his ward I am now mounting them on black card and painting picture frames round each one (a little more economical than the hundreds I would have to buy). When they are up, I will take photos for you.

The hospital work very closely with every patient to balance the right time for discharge. Thanks to my brother Hugh we were in a strong negotiation position to get Ken out due to the close proximity of the apartment. Their calculation weighs up his need for sleep as well as the increased risk of infection from staying in the hospital. Then their is the motivational impact this next step has, not just for Ken but for all of us. So, here we are!

The next stage will be tough for Ken. He has so much work to do. His body has severely deteriorated given the ‘malingering’ (as he put it) during those 16 days before he woke up. It is astounding how quickly muscle weakens if not used. He still needs his wheelchair for any distance. That said, he did insist on walking into the hospital on the day of the operation and today, he insisted on walking out of there. I love that about our man! The photos I have attached are of these ‘new chapter’ moments but it would be unfair to mislead you – he needs a lot more time before he is really up and running. But let me assure you, I see that familiar look in his eye, and smile in the knowledge he is as focused and determined as he has ever been. And for those of you who have contacted me to say there are more ‘GoKennyD’ photos to come, please know your motivation will continue to make a huge difference to us all. 

In order to accept his new lungs he must now take a regiment of drugs every day to suppress his immune system and protect him from infection. The drugs will take some getting used to and the hospital will work closely with him to create the best version of dosage ideal for Ken. He will be at the hospital 4 days a week working with physio, attending clinics and check ups. It is a lot….but it is all worth it. And they have done a great deal to prepare both of us. Two days ago we attended a class to learn more about all the medication. I sat in a room with other recipients of liver, kidney and double lung transplants. One of the ladies there looking after her husband was wearing a t-shirt. It read – “Don’t take your organs to heaven. Heaven knows we need them here”. And as I looked around the room I marvelled at the patients and those caring for them. I thought too about those who have lost their loved ones and had the courage to follow through on their choices at such an impossible time. And I realize once again that even in the most terrible of situations, miraculous, life changing things can be passed forward. So my friends, please – go register and become a donor if you have not already done it. It is just the right thing to do.

Ken is sleeping and my happy day is wrapping up too. But I cannot sign off without thanking my Jilly B who made Canada what it has become for me; my Ellie-Belle who has the ability to make me laugh even when it hurts, and my Lochie & Jock who are the bravest kids I know!

I am sending each and every one of you all my love and thanks.

#GoKennyD

http://www.littlethings.com/didnt-it-rain/?utm_source=LIVE&utm_medium=social

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About sallyjmdouglas

Kenny D's wife
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