The smiles are mixed with lots of tears as we are finding the build up to the operation really tough. Lyall has had lots of major operations but there is a difference with this one. The others saved his life and we didn't have a choice. He was critically ill and without either of his heart surgeries, his tracheostomy and even his stomach surgery he would have deteriorated and died. He is stable at the moment, his life is good and he is thriving. Compared to the boy who was clinging onto life in PICU 4 years ago and compared to the boy who came home on 24hr ventilation things have dramatically improved. We could decide not to do it, we could wait and see if his airway gets bigger over time but there is no certainty that it will.
We have agonised over this. Lyall has never taken the path expected of him. His heart wasn't supposed to fail after 3 weeks and require surgery at 4 weeks. After his stomach surgery he wasn't supposed to have episodes of terrifying erratic breathing and the epidural fail. After his 2nd heart op he wasn't supposed to present with a rare breathing condition requiring long term ventilation and after his trachesostomy he wasn't supposed to take another 5 months to get established on a mobile ventilator as his lungs were so damaged.
This is why we are terrified but we have to take this chance. Lyalls life would be very different for him without his trachesotomy.
For Lyall we will face our demons and for Lyall we will be strong.
We have a quote on our wall by Ralph Waldo Emerson which we say could have been written for Lyall
"Do not go where the path may lead, go instead where there is no path and leave a trail...."
Love that quote, very apt!
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