Consent forms, Runners and Seagulls

Today we had an appointment with the surgeon to go through some of our questions and sign the consent form. We asked him to go through the whole procedure which he did and lots of things became clearer. 

First he will do another full assessment of the airway and if there is any inflammation he won't continue. However if things look OK he will continue and take out the piece of rib. He'll then open up the airway and graft the rib into the weak areas, sew him up and he'll be moved to PICU and then we wait! 

He completely took on board our concerns about sedation and the amount Lyall needs to keep him under. He acknowledged that there would be withdrawal symptoms from this and this would be distressing for us and Lyall

Even if initial signs are good when Lyall is woken up and the ventilation tube removed the night times will be critical. Lyalls breathing may be more laboured, he may require some oxygen and he may even have apnoeas. Even if things are OK initially things can still fail after a few days/weeks. The first illness will be telling. Its certainly not going to be straightforward. He said some parents even miss the trachy which is something we can relate to and something people have talked about in our Trachesotomy UK support group.

However we were left in no doubt that he wouldn't be attempting this if he didn't believe it was the right thing to do and that there was a very high possibility of success. So we signed consent form number 20 and in 10 days we'll be back!

Walking back through the hospital we bumped into 2 of the physiotherapists who work on PICU. Lyall was running along the corridor and they didn't immediately recognise him but were so delighted when they saw him looking so well. They had heard he was due to be having the surgery and are very excited for him and us. Apparently he is talked about lots and loads of people in the hospital are absolutely willing it to succeed. When we bump into people who saw us on an almost daily basis through the most challenging period of our lives it is a unique feeling. They understood our fears but also get the potential of what this could mean. We are so pleased that there will be lots of familiar faces working in PICU when we are there- we need that support to help us cope whatever the outcome.

We then went to Roundhay Park where Lyall loved watching the runners and signed "running" at each one who went past. He made us do some running with him which makes him laugh a lot! We then all laughed at at seagulls sitting on posts and wondered what they were all waiting for! And why did one post not have one on? Good to have something else to think about momentarily. Thanks seagulls!