Our little guy was in fantastic spirits today, wide awake at 6:00am and raring to take on the challenges of the day.

It was a busy morning preparing for the procedure with visits from theatre staff who would be involved not to mention the line of Specialists, nurses, Social Worker and volunteers all dropping by to wish him well. He was in full form offering cups of teas from his tea set and offering new hair do’s to those that agreed. Its days like these that you realise just how much of a following our little guy has around this large and busy hospital.

He was entertained by his Music Therapist, Easter craft activities dropped off by the play therapist and to finish the afternoon he finally agreed to his Oncology Doctor drawing in his stomach, something he has been threatening to do for months. On most consults (as an in or out patient) his Oncology Doctor draws a picture on his hand- these include but not limited to Mickey Mouse, airplanes, Thomas the Tank Engine, and stars to name a few. The minute he walks into the room Edward arms himself with a pen and presents both of his hands to Luce for drawing. We actually have to keep a “Luce pen” in his hospital kit along with his Thermometre, Oxycodiene and Morphine. These pictures are always drawn upside done so that they are in the correct way up for Edward to see. Once, I spent the good part of a clinic visit watching him on Google images trying to flip a Peppa Pig image upside down as it was a new request and Peppa Pig unknown to him, can you believe? Its amazing what 10 years at university can do for you, but jokes aside he is such a lovely, caring, amazing Doctor who has been so kind and caring to Edward and our family- we couldn’t ask for a better Oncologist. For several months he has been threatening to draw on his stomach which previously Edward had denied access but today consent was granted and you can see the result below. I’m just waiting on a visit from DoCS to discuss the pictures and general hygiene as he went down to theatre with the red drawings in his stomach and both hands.

The minute the bed began to move out of ICU and towards the theatre the charm button was hit harder. Calling out to the ICU doctor who was assisting with the transfer to hurry up and come with him. He chatted happily with those he met along the way and even tried to engage with the nervous 13 year old in the theatre waiting bay next to him without much luck, hard to imagine I know. When I gowned up he too insisted on wearing the hairnet, something not essential for hygiene but for him to show off.

The procedure took an hour and half and he is now relatively stable back in  ICU intubated, ventilated, calm and sedated. We won’t really know how successful the procedure was for a few days until he is extubated and oxygen requirements established but overall they were extremely happy with how he tolerated the Lung Lavage under General Anaesethic.

In the meantime here are a few pics from today

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4 thoughts on “ICUpdate

  1. Thanks for the update and so pleased to hear Ed was in great spirits. Let’s hope the results are good xxx

  2. Thanks Ali, so glad this went OK. Your posts should be read by the general populace to have us all realise there are families and kids really doing it tougher than most of is can imagine. Try to keep your box on an upper shelf. Lots of love.

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