The Friday previous he was so smiley and looked really well, the following day he looked a little red under his eyes and did a few impressive colour changes that I called the Pallative care nurse. I already had antibiotics to give Ethan in the event that I felt he needed them so I restarted them, even though he had only been off antibiotics a day.
Saturday he was up with me playing until 1030pm, we had a music night with my step children and Ben watching the BBC proms then my wonderful partner got his guitar out and then played the piano and the children including Ethan joined in.
I am thankful that I managed to get some recording of Ethan singing that night - he was being his normal typical monkey self.
The next morning Ethan would not not wake, he was an awful colour. I was calm and just tried to wake him and then went to get my partner for him to help me as he is a Dr. When he came it was clear Ethan was having a fit of some kind, one which we think was due to low oxygen levels.
I gave Ethan some medicine and he came out of it, he was restless and unhappy. I tried to give him a cuddle but he was arching his back so I put him in his pushchair where he was comfortable but safe. His lungs sounded dreadful so I tried to give him a suction to see if that would help. I really hated doing that - it is one thing to do that when he is little but when is a big boy and can fight back.... it was distressing.
Suction did not help and it was clear that the noise was coming from his chest not his throat or nose. Then I called the nurse again to tell her things were worsening. I started him on her advice on more medicines as I had been trained to do in this event and she visited us at 3pm.
The nurse, Harry asked us if we wanted to move Ethan into the hospice but I said no. I felt that if you feel ill which Ethan did, then being moved is the last thing you would want. I also felt that I had up until that date cared for Ethan from his birth onwards, and that it would be me to care for him until the end.
So Ethan stayed at home with me. As the day progressed he got worse, though I still had hope. Harry would call every couple of hours and come 9pm I had to say we needed to give Ethan even stronger drugs. Harry had to get authorisation from the hospital to do so - which she got.
I went to bed at 12.30am but sat watching Ethan on a video monitor until 1am. Ethan was restless and was also thirsty so I had kept coming down to give him water on his tongue and lips. I also kept kissing him and cuddling him and singing. He wanted the radio on all the time so I left it on.
He would wake a few times listen to the music and have a dance and then fall asleep again. He used every last bit of energy he had to dance. He loved music so much.
At 3.30am I awoke with a start and just ran to see Ethan, and I knew. I knew he had passed away. I then called my partner to ask him to check for me which he did an dthen I called Harry.
Harry was just fantastic she came and confirmed that he had passed away and then carried him into her daughters car seat and we transferred Ethan to the hospice for his resting place.
We placed Ethan into his bed and I changed his nappy. I then had to return home to get the children to school while I digested what had happened and made the many phone calls. We told the children that evening after school.