So this is the post I have been putting off for months.
A fortnight after we brought Emma home we had our first major incident. On the Friday night I slept with Emma as usual, and half way through the night I realised that I wasn't functioning properly. I was just too exhausted. I woke Andy up and asked him to take over, which he did without hesitation. I fell into bed next to David and passed out. In what seemed just a minute, but was in fact several hours later I was woken up by Andy shouting, and the apnea alarm going off. I ran into the small bedroom to see her in the middle of the bed lifeless & blue. Andy was scrambling through the emergency box repeating to himself "Tube change, it's blocked." We quickly changed the tube, Emma was non-responsive. When we removed the old tube, a long string of thick secretions came out, stuck in to the bottom of the trach tube. With the blockage removed, and a new tube in, she should have started breathing again, but she didn't. Andy started to perform CPR. He breathed 2 breaths in but them seemed to hesitate. I told him to go and phone for the ambulance, and I would deal with Emma. I don't know what made me say that. He agreed and went, and I knelt of the floor, and breathed five breaths into the trach tube. With each breath I thought after five I will have to start chest compressions. My heart was screaming "Come on Emma! Don't go!" On the fifth breath she spluttered back to life with a big cough & opened her eyes. I shouted that she was ok, Andy was already on the phone, and I could hear him telling the operator that she was breathing again. I just sat & watched her, and she just looked at me, lying still with a "What just happened there?" expression on her face.
Andy came back upstairs, and said the ambulance would be here in a few minutes, he would go and wait at the corner of the street. They seemed to be with us immediately. Seeing that she was breathing, they quickly checked her over, and asked us if she was always that blue colour, which she was! They asked if we wanted to take her to the hospital, but we didn't feel it to be necessary, we knew why she had stopped breathing, and felt confident that she was alright. At sometime during their time there, 6yr old Lizzie walked in and asked them not to be so noisy, as it was night time, and she was trying to sleep! We thanked them for coming so promptly, they explained that Emma was highlighted as an emergency case & they would always blue light to us if we called.
We took it in turns to sleep over the next few nights. It was a very odd feeling realising how close we had come to losing her. On Monday morning our GP telephoned to see how our weekend had been. She was quite audibly shocked by my response, and she told me to leave it with her. She called one of the community nurses, who was at the hospital, she told Emma's Paediatrician what had happened, and within an hour she was at our home with an oxi-pulse monitor he had unplugged directly from the ward. We kept it for 6 years, and it brought us peace of mind, and an opportunity to deal with thickening of secretions before they blocked the tube. Later in the week the nurse also brought two humidifiers which helped to keep the secretions looser, and easier to remove.
We had to rearrange the bedroom, we moved the bed. Whenever we walked into the room, we just kept seeing Emma still and blue on the bed underneath the window. It was a traumatic experience, but also an empowering one. It filled me with confidence that in an emergency, we did know what to do, and we would do it.
Phew! I have written it down :-) At last!