We got home Monday morning and after getting no sleep for 3 nights I was finding it hard to even function on Monday. Had a redbull about 3pm and still managed to fall asleep putting Ellie to bed at 8pm.
Harry went to school and did his first PEAC on Tuesday, which he really enjoyed. Then he want back to school for the afternoon and then Ellie had dancing. Had a swim when we got home as it was so warm. Showered and came in for dinner and it was still really hot so I put the air-con on and Harry said 'can you turn that off it is freezing?' Oh no, 38 degrees and he is cold! So checked his temp and it is 38.2! Oh dear, check it in another hour and it is still up. I really thought I was never going to have to pack that bag again.
Wednesday 16th February So we are now here again. They have decided to remove Harrys port. I thought it was an option so told Harry not to eat this morning and wait till the doctors had come round. They decided to ring and see if the port could be removed and booked him for tomorrow. So before we let him eat we made sure that they were 100% sure it was not going to be today and then harry had a few crackers to eat. Not half an hour later they came down and said it was going to be today!! So now we have to wait till 5.30 and Harry can't eat again.
Picked up Ellie from school and forgot it was early pick up. Luckily Linda reminded me, and got there just 10 minutes late. Bumped into Karen, Grace and Nicholas who said 'well done on getting through the treatment.' You can tell those who have walked in these footsteps before, as they understand where you are at the various stages!!
Looks like someone has just come down and we could be going shortly. Not sure when we will be out tomorrow, but hoping that we will be able to get some day leave for Harry to go to Elliots funeral. Love and hugs to Rick, Emily and boys.xx
Ciao for now,
Vic
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