So Emma was 12 weeks old when she was trached, we spent 4 weeks in the Children's Hospital and she went into respiratory arrest a fortnight later. So at that point she was 18weeks old. That week we had an appointment at the children's hospital, to see the Oncology Professor. I remember when we walked into the unit Emma smiled for the first time since we had left the hospital. She grinned like a lunatic at every nurse! In her mind you could see she was at home. We had to cross the city from the car park, she had so much equipment that we used the Silver Cross carriage pram, the shopping tray was full, and there was more stored by her feet. She was stripped and weighed and measured, and Prof was happy with how things were going. After that Emma was happy, & each week we returned to the Children's Hospital she would light up. Sometimes we saw two or three departments the same day. Andy always had to come too, as he drove whilst I watched Emma for signs that she needed suctioning.
We used to take David who was 2yrs old with us. I remember him playing on the large climbing frame in the large Victorian outpatients waiting room, and giggling at the hot air blowers in the bathrooms which were the right height for him. He used to have a little stripy backpack full of miniature books, which eventually passed on to Emma. We would read them over and over again. David still wasn't speaking, when he was upset or cross he would growl,and if he was very happy he would giggle, but those were the only noises he would make. He was a serious little boy, who spent time ordering his toys according to size and colour. He loved stories and cuddles, and more than anything he loved Emma.
At the end of July we were awarded 10 hours a week at home nursing care. We were introduced to two agency nurses who became angels to our family. They were both older ladies, in their 60's, and had cared for another child for 6yrs until he had his trach removed just a few months before. Even so I didn't leave them in sole-responsibility of Emma for many months. If I hadn't slept, then I would lie down on the couch. They would help me to bathe Emma, and to do the daily trach care. Some days I couldn't let go of her, for different reasons. Sometimes she would need need cuddles and breast-milk, and we would just sit and they would play with David, or if he was occupied or napping then they would do housework for me, or start prepping the evening meal. Nothing was too much or too little for them. They stayed with us for almost 3 years.
In August, on the day of the solar eclipse, Nurse W was with us. Emma had felt out of sorts for a few hours, W observed her for a while, but it was only when we wired her up to the oxipulse monitor when she dropped off for a nap that we saw the seriousness of the situation. She was struggling for oxygen. I called an ambulance, and we were blue-lighted to the local hospital for the first time with Nurse W waiting at home with David for Andy to come home.
After a break of a year, that's not enough. I'll write about our first post-op hospital stay next.