We have just got home after a very long and emotional day. Lyall came up onto PICU at about 2pm. The surgeon is very pleased about how the operation went.
Lyall has had some ups and downs with his heart rate, SATS and blood pressure and he still hasn't done a wee which is a side effect of one of the drugs he is on. He is being given fluids and will be started on feeds via his gastrostomy in the morning. Currently he is being given a drug that paralyses him as well as massive doses of sedation. His vent pressures had to go up a bit to help keep him stable and keep his CO2 levels down.
Its so hard seeing him like this, wondering if he is dreaming, if he can hear us and hoping he doesn't get agitated.But he has 1-1 nursing and the staff are all acutely aware of how quick he can be at pulling out vent tubes if his sedation isn't kept under control.
Dan and Max have both been in to see him and whilst shocked by all the tubes and wires they are OK and glad to have seen him.
The hope is that Lyall stays settled and sedated and keeps his vent tube in until Monday and then they will assess whether its time to wake him up or if he needs to be left a bit longer. He feels that Lyalls breathing will be ok in the day but the challenge will be night time when he may struggle to adapt to breathing through his nose and mouth. He will tire more easily at first and the first few months will be crucial especially the first time he gets ill. So whilst the hurdle of today is over there is still a long long way to go.
Its been weird being in the LGI today as once again it is the focus of media attention. However our experience today has been incredible. We have bumped into numerous people who have been involved in Lyalls care over the past five years. When we got up onto PICU we were greeted with hugs and there was so much excitement amongst the staff about having Lyall back on the ward for such a momentous operation. When I nipped out for a sandwich I bumped into his cardiologist who threw her arms round me and asked how it had gone. Then as we were leaving we bumped into the surgeon who diagnosed the condition that led him to need the trachy/ventilation in the first place-he had already taken time to find out how Lyall was.
When we are in the LGI we feel safe, we are surrounded by people who have seen us go through the worst of times, who have seen the boy who wasn't expected to survive go on and beat the odds and thrive. After initially falling apart when we had to leave him in theatre, sitting eating lunch in the foyer of the Jubilee Wing we felt OK. Spotting friendly faces, receiving texts from his Long Term Ventilation nurse, getting a phone call from the surgeon to update us-it was all reassuring and all calmed us down.
Facebook has also been wonderful-to know how many people are thinking about us is just incredible and really has helped.
So tonight we sleep in the house without our littlest man. Its a strange feeling. Ever since we ditched our care team in Feb 2012 there has always been one of us with him to meet his care needs. Its strange not listening out for his monitors and glancing at him on the video monitor. When he is ill one of us always stays in hospital with him but parents can't stay on PICU so we've left him as we did every night for 7 months when he was in PICU in 2010.
***We've just rung and he is settled-a catheter has been put in and now he's weeing loads.
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