Lyla’s osteotomy surgery took seven long hours. The surgeon advised us to leave the hospital and go get some food as we would be staring at hospital walls for the next week. I can’t remember what we ate, I just remember how strange it felt to leave the hospital without Lyla. After eating we spent hours wandering round the shopping centre 10 minutes away, not sure what to do with ourselves. We considered seeing a movie but none of the showings were at the right time and anyway I knew I couldn’t sit still for that long or concentrate on a storyline. So instead I bought things I didn’t really need and stared in shop windows. The time eventually came to go back and wait for Lyla to come back to recovery.
Seeing her for the first time was such a relief. She was ok. She was pale, sleepy and quiet but happy to see us. She had an epidural, which would stay in for the next three days, plus all the medication from the anaesthetic so she needed to be closely monitored and spent the night in Intensive Care. Seeing her with all the monitors attached and the ivs was confronting but seeing her cast was a really strange experience. It really was very very pink, as she had requested, but it seemed smaller than I had expected. I had focussed so much on the cast that in my mind I had made it really huge, I had forgotten that she is such a little bird that of course her cast would be little too.
After a night in ICU and a blood transfusion to replace the significant amount she had lost in surgery Lyla was moved up to the orthopaedic ward. Even with an epidural and morphine, Lyla was very anxious and upset. The hardest thing was not being able to pick her up. All the monitor wires, the epidural and the spica cast made it impossible to just pick her up and give her a big cuddle. The best we could do was to put the side of her bed down, lay our heads on the pillow beside her with our hands on her chest to reassure her and talk to her.
I stayed in the hospital with Lyla for the week. Kris looked after Blair and came in to give me some relief and help every day. Lyla’s grandparents and our friends helped with collecting Blair from school and coming in to visit to bring coffee, give us all some support and to show us that they cared.
The next 48 hours all blurred into each other and I’m not really sure what order things happened in during this time. She would sleep for what seems like minutes then wake up crying. In the middle of the night it was agreed that the spica cast was too tight about her belly so that was cut after a late night call to her surgeon. The next day the anaesthetist agreed to more iv medication to help her stop spasming in the cast which was seemed like a good idea but her two cannulas were tissuing over and getting more cannulas into Lyla’s little veins with her extreme movement and distress was impossible for anyone other than anaesthetists. After one junior doctor and two registrars had turned her into a pincushion I refused to let anyone else go near her with a needle unless they were an anaesthetist. Standing my ground on this was easier than I thought it would be, it’s amazing what power you have as an angry mama bear. The nursing staff and the doctors all stood down very quickly when I said no more.
Once the cannulas were finally sorted she calmed very quickly and slept for 14 hours straight. I felt like we were over the worst of it by day 4 but I was wrong, we weren’t over the worst of it. Every time I said that phrase to someone during that week I was proved wrong so eventually I stopped saying it. While I was gone the anaesthetist removed Lyla’s epidural and she screamed for hours and there was nothing anyone could do to calm her. Eventually she exhausted herself and sleep eventually in the early hours of the next morning.
I sat and cried. I don’t cry very often but lack of sleep and an overwhelming sense of helplessness left me wondering what on earth we had done to our baby girl and how unfair it all was. We couldn’t control her movement or spasms in every day life so why did I think it would be different after surgery? This was most definitely the lowest part of the week. It was 4 days post-surgery and instead of getting better she was getting worse.
Friday morning came and there was no sign of Lyla being discharged. She was agitated, running a temperature and looked terrible. We hadn’t seen her smile since Monday morning. Bloods were taken to ensure that she didn’t have an infection and her surgeon came and sat with us again. He had been to see her every morning and every evening that week and we could see that he was genuinely concerned and felt terrible that she was having such a rough time. I was so grateful that he managed and coordinated her care so well ensuring that there was a bed in ICU that weekend if she needed it, that the pain management team were on top of everything and that we knew although he wasn’t on call that weekend he was in Glasgow and was just a phone call away, most importantly he listened to us and empathised with us and spoke to Lyla directly about how she was feeling.
The weekend was mercifully quiet. Sunday was my birthday and it brought the perfect present; Lyla’s first smiles in 7 days. My parents arrived and we had some lovely visitors who brought presents and cake for both of us and getting the balance of drugs right meant that she wasn’t in pain anymore. As days in hospital go, it was a good day.
Monday came, Lyla’s temperature was normal and we were allowed to go home. She was fitted for a special pram which would accommodate her cast, we were given an adapted car seat which she would be able to sit in, we had an insane amount of pain medication for her and we were ready to bust out of the ward that had been our home for the past week . We had mastered the art of changing nappies in the spica cast which was very difficult when she was so swollen and there was so little space between her body and the cast. When we talked about the pram and going home with Lyla she would get upset and scared. She used her PODD communication book to tell us that she was worried about her cast. Once again the bedside manner of her surgeon was impeccable. He talked to her about the cast, how strong it was and how it would stop anyone from hurting her hip and how safe she would be in it. I can’t over emphasise how important the empathy of the surgeon, the pain management team and the nursing team was to us. We knew that they cared, they didn’t want to see her in pain and that they were all doing their very best to get her well again.
That night we were all home in our own beds and I lay awake thinking about what the next 6 weeks with Lyla in the cast at home would look like.
Part 3 of Our Femoral Osteotomy Journey coming soon