2nd of March 2023. The day I had to man up.
Oakley was doing as good as could be. I was such a proud mum. He was showing me what true strength was. I felt like the weak one constantly being in tears around him. It was guilt, guilt he had to go through these surgeries. If only I could swap places with him. He’s a true King to me.
It had been a long few days but my dad spoke to me that morning, he said if you want to go home you’re going to need to get over the fear of the metal work turning. He said ‘me and Jane can’t do it for you Talia we live down south.’ I had to just get over how I was feeling and learn. Oakley was still using oxygen which is normal for him after a surgery. The hospital needed me to do a few turns before they would even consider transferring him to the hospital in Newcastle.
The Drs and Craniofacial nurse came round. They explained again that the turns need to happen, one in the morning and one in the evening. You can’t forget to do a turn so they gave me a sheet to tick off. I’ve attached a photo of the screwdriver I had to use to turn oakleys skull. It’s sickening when you think about what you’re having to actually do. Turn my babies head with a screwdriver? It isn’t ok but it needed to be done.
Times like this is when it hits me that Oakley’s syndrome wasn’t picked up during my scans. If it was I could have prepared myself and the other children for everything that was happening. I still had a lot of anger towards the fetal medicine for discharging me and telling me everything was ok. It was very hard to explain to Siennah about the surgeries, especially this one as it was very last minute. The school were very supportive by talking to her for me when I was in Liverpool. My mum had the other kids so I FaceTimed a few times a day and put a brave face on, I didn’t want them worrying or seeing me sad.
Anyway I did it!!!!! After having a bit of a breakdown, did it, I turned the distractors on Oakley’s head for the first time. You click the screw driver on and do one full turn, it can be very fiddly if he’s moving around. Then unclip, then turn the other side. I did feel like I was getting judged as I was getting so upset about it. For the Drs and nurses this is their bread and butter, and this was my son’s skull I was moving. So it’s very different for me and them. My dad got a bit upset and said he was proud of me, which then made me cry again! So we were a right pair in tears. Oakley’s head was bleeding on and off where the wound was open, this was normal so they taught me how to clean the scar from ear to ear.
At this time there was more stuff going on on social media which I decided to ignore, I was focusing on Oakley and the hospital. I knew I was being a good mum and was doing the right thing by my son. I informed who I needed to and left it at that.
My mum FaceTimed Oakley with Maddox and Romeo and they were over the moon to see him. Romeo was asking lots of questions and I just had to say Oakley needed the doctors to make him better. It does break my heart listening to the boys and Siennah, they see a lot of medical things which I’m trying to normalise for them.
I don’t want Oakley to ever feel embarrassed or ashamed of anything he’s been through. I want him and his siblings to be so proud of what he’s overcome. Even the machines he uses – I never thought I would ever have to explain to the kids what the sats monitor does, but now Siennah knows what oxygen levels Oakley needs and what makes him go into hospital. I feel like I’m asking them to grow up to fast sometimes, but it’s not that, it’s that they need to be aware Oakley needs medical equipment and that’s ok.
I got a bad message once which stuck in my head, someone accused me of ruining my children’s childhood for explaining what Oakley’s machines do. Which is completely wrong, Oakley has a syndrome and unfortunately he’s at the higher end of the spectrum with his breathing and the kids need to understand that they alarm sometimes and the machines help mummy care for Oakley.
Anyway I was proud of myself at that point for turning the distractors as it was one day closer to being back in Newcastle hospital. Oakley gets poorly after an operation because of his respiratory, so the Drs needed to keep him in for longer. Also because he had to have a blood transfusion.
I don’t want anyone to think I’m a wonderful person for doing all this. As I do get a lot of people say that… I’m his mum it’s my job to do what I can to care for any of children. I’m sure any mother would do the same. I just want to say a lot of you are mothers who follow me and you’re all doing an amazing job.
Back to the hospital – Oakley’s breathing still wasn’t great, he was still recovering but he was relying on the oxygen. I phoned Oakley’s airways specialist nurse in Newcastle and asked her to speak to his consultant to see if they could do anything or advise anything. I was still not feeling confident being in another hospital where they didn’t know Oakley properly. I hope that doesn’t sound unreasonable. It’s very hard to trust people with Oakley when he has so many health issues. Especially when the syndrome is so rare. A lot of nurses will even say “I’ve not seen a child with this condition.” Which worries me as Oakley’s breathing is so unpredictable.
Oakley also had the Dr come over from the eye department while he was an inpatient to get another opinion. A lot of Apert children have hearing, vision and breathing issues.
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