It’s hard to believe that it’s been three months today since Josiah had his surgery for craniosynostosis. In some ways it feels like a lifetime ago, and in others just like it was only yesterday. I’m asked frequently how he’s going, and I apologise for not updating here any sooner than this. Once we got home from the hospital all I wanted to do was run as far away from the whole experience as possible, so sitting down to write about it wasn’t high on the list of things I was keen to do!
The surgery itself went incredibly well. He lost minimal blood and they were happy with the way they were able to reshape the skull bones and put it all back together. Seeing him for the first time in PICU was awful. He was screaming hysterically, all I wanted to do was pick him up and hold him close, only he was connected to all sorts of machines and they were busily working to try and get him all set up and settle him. Thankfully I was able to offer him a breastfeed and he settled some as long as he knew I was close. I sang to him, prayed, and kept reminding myself that soon it would all be ok! That first night in PICU I lay in the bed beside him and he stayed permanently attached the whole night, crying every time he moved and needing lots of pain relief. It was intense. The following day we found out his sodium levels were dropping, the paediatricians involved in his care decided to restrict his fluid intake, which meant expressing and bottle feeding so that we could see how much was going in. That was also intense.
We spent another night in PICU because his pain levels were still not great and they wanted to monitor his sodium levels. The next morning saw a visit from a pastor from our church, and another friendly face from our previous church who worked in PICU and was on duty that morning. So nice! Unfortunately Jeremy came down with an awful cold at this point so was unable to come in – not worth risking him making anyone else sick! Thankfully I had wonderful support from my friend Mary who was able to be with me most of the day, to hold Josiah when I needed to crawl under a rock and sleep for a little while, and remind me that it would all be ok very soon! The next few days saw improvements in his pain levels, not so much in the sodium levels so once we were on the ward he had to have daily blood tests and we were told to continue fluid restrictions over the weekend. Not so fun. We were discharged Monday morning (surgery had been the previous Wednesday afternoon) and were so incredibly grateful to be heading home. I’m thrilled to say that not once were both his eyes swollen shut at the same time, I was amazed by that and so grateful as I had expected much frustration from him if that had been the case!
Since then, he has healed beautifully, his hair is growing back so quickly and he has taken off, running rather than walking! He is an absolute delight to us, a cheeky little monkey with such a gorgeous personality and those deliciously bright blue eyes. We will have appointments with the plastics team as he grows to monitor his head, but so far he is doing wonderfully and we don’t anticipate any other issues for him relating to his cranio. I’m so very grateful to all who supported us, loved us and prayed for us throughout the surgery time, and since then, and I have to say, I am so very glad to be on the other side now!!