Ethan had a good day and was happily playing (and pink) until 10pm last night! I even managed to record him singing!
This morning I woke up and Ethan was pale pale grey and blue and not responding. I tried to wake him up but he was just floppy and not waking up at all. Then I placed him into his chair and he looked like he was fitting, pupils dilating and fixed and fists and jaw clenched. At that point I went and got the man to come and help (calmly I might add as the children were eating their breakfast around me).
After giving Ethan his medicine he "woke up" though was still a bad colour. I had to suction his nose and mouth to help him breathe. He was (and still in) respiratory distress with nasal flaring, tracheal tug and severe recession/stomach breathing.
He was quite upset looking at me with scared big eyes and waving his arms in the air. I called the pallative care nurses who told me I could give him diazepam which I did do and after some time Ethan fell back to sleep.
All day today his colour has been awful and breathing just laboured. At one point he stopped breathing and I put my hand on his chest and shook and he woke up and cried out and then went back to sleep.
The nurse came out to visit and told me if I wanted him moved to the hospice then I should do so now. However I feel I want him with me - in an enviroment that I can carry on as normal and keep myself busy. I think I may fall apart if I just sit by a bedside. Tomorrow night they will arrange for a night nurse to sit with Ethan overnight, however the nurse doesnt think Ethan will give us much warning.
Ethan had another period of being upset in last hour and half but after his normal meds and some more sedation he is settled. I dont think I will be sleeping much tonight.
In the meantime normal life resumes - childrens homework needs to be done, dinner cooked (I have cooked for tomorrow as well) washing done etc.