Thursday 17th March
The day after Zach’s operation is a blur as it went so quickly, and we were utterly exhausted. Both physically and mentally. Zach was doing remarkably well and hit some major milestones as the day went on. During the morning wardround on PICU, the consultant asked for Zach to be taken off the off the ventilator. We were asked to leave for the extubation , so we disappeared for half an hour and had another agonising wait to see if he would be able to breathe on his own. He did brilliantly and just needed a bit of oxygen to help him.
A few minutes after we arrived, we had a small hiccup when his blood gases came back showing his carbon dioxide was too high. This was the first scare we’d had post op, and I suddenly felt sick and remember how fragile he was. We could still lose him. We had to move away from the bed as some consultants came over and discussed the issue with the nurses and registrars. One of the many impressive things about intensive care is how transparent they are with you as a parent. The discussions take place right in front of you. They stopped his sedation and gave him something to make him come round and have a good cough. This helped him to clear his lungs and when his repeat blood gases came back, the Doctors were much happier, as were we.
Later that day he had his chest drain, arterial and central line out, as well as his Canula. He was beginning to look like his old self again – well sort of. I could tell by the way Zach was sucking on his dummy that he was hungry – it had been a long time since he had any milk so I asked if it would be possible. The answer was yes, so we got to give him just a little bit of breastmilk down his tube. He seemed so content and went straight to sleep.
When he was sleeping Zachs nurse asked if we would like a cuddle now that he was attached to less lines and it was easier to move him. Just a little bit! Yes!!! I sat in the big chair and waited patiently, with tears in my eyes. I couldn’t believe this was already possible. Zach’s nurse handed him to me carefully, with Alex’s help and he snuggled straight in and carried on sleeping. It was the best feeling ever. He still didn’t smell like himself, but he was all mine. I am not sure how long I sat with him for, but it must have been more than an hour. In the end, Alex asked if he could have a cuddle, so I reluctantly handed him over. He had been so patient letting me sit there and drink him up.
That evening, his catheter and oxygen support were removed as well as his Pacing box. His heart had not needed to be paced, but the box was attached to the pacing wires left in his chest just in case.
Zach was proving himself to be one tough little boy, I could hardly believe how well he was doing.
Friday 18th March
We arrived this morning to find Zach dressed and pretty alert. He looked amazing! When I lent in to give him a kiss I couldn’t believe how good he smelled – he’d got his smell back!
At 10:00 we discussed giving Zach his first breastfeed. I felt so excited but really under pressure too. I knew that I had plenty of milk, as I had been expressing every 3 hours round the clock – but I was so worried he wouldn’t feed. I needn’t have been worried – he fed like a champion for 20 minutes straight. He was a hungry boy! The second feed went equally well and before we knew it, we were told Zach was well enough to leave PICU and head back to the ward. So just after noon, we said goodbye to the utterly awesome team in the PICU and headed back to the Ocean Ward.
I have to be honest that arriving back on the ward was a total and utter come down. There was little monitoring and compared to PICU the staffing was scant at best. Zach and I were left to just get on with it. There were nosy mum’s asking intrusive questions. Our curtains keep getting pulled open and it was so hard for him to rest. I hated it. I wanted to be back in the ultra cool safety of the PICU with the wonderful nurses and Doctors who looked after Zach like he was their own. I couldn’t bear it. The only highlight was a visit from Alex’s mum and dad and my special bear.
I hadn’t really thought about going home before that point, as I had felt so comfortable on PICU I didn’t mind. But I was now desperate to get Zazu home and continue his recovery together as a family. I missed Alex, I missed my bear and I missed our life at home.
As it turned out, we only had 2 more days to wait, as we were discharged on Sunday 20th March. It was an incredible feeling to be able to take Zach home with his heart repaired. We are forever grateful to those remarkable people who looked after him so incredibly well.
Getting home was so special – the world was the same but our lives felt different now. All we needed to do now was to get rid of the last crutch – Zach’s feeding tube.