This is a very sad email to you all. I am broken hearted to tell you that Thomas passed away on Friday evening at about 6.45pm.
I am so sorry to give you this news. I am so sorry that a lot of you will be reading this at the start of your working week. I am crying too.
Thomas passed away in his Daddy's arms, with me and Rowan and Pippa his nurse. We were outside on a balcony on the third floor. We had lots of cuddles with him before he passed. He had his eyes open and was looking around, he smiled, he knew that he was somewhere different. There were no beeping machines or people he didn't know nearby. We had photos. Dean played him some songs on the guitar that he composed. We were able to spend some time afterwards with him having more cuddles and I bathed him. When we left Thomas, he was in his bed cuddled up in a lovely blanket that his Mama made him and he had all of his teddy friends with him.
The Doctors told us that the results of the bronchogram that Thomas had yesterday were extremely bad and that he would probably pass away very soon. Much higher pressures were required to keep his airways open than he had been needing last week and that was higher than the week before and this had been a trend for about the last 6-7 weeks. He was requiring more and more medical intervention to help him overcome the hypertensive crisis' when they occurred and they were occurring much more frequently. Yesterday when he was in Theatre for the bronchogram he had to be given a dose of adrenaline to help his heart after a severe hypertensive event. That's when the line was drawn. It was no longer active treatment in Thomas' best interest. Given the results of that bronchogram, any further medical procedures were not fair to him.
We were privileged to be offered the opportunity to be prepared for his passing rather than it happening in an emergency medical situation. I am so thankful for that. Thomas was in no pain, he was not distressed at all. He just went. He went home to Jesus.
Much love to you all from all of us
Julie, Dean, Rowan and Thomas
ps: I have updated the pictures on the internet here is the link