As we entered the summer months professionals around us chased and chased an op date but lists were cancelled due to strike action ( 100% support this but it really did hold things up). Finally we got a pre op date - on our 20th wedding anniversary in July. Of course nothing quite says “happy fucking anniversary” like discussing a risky operation. The pre op was awful. No date for op and the anaesthetist was unhelpful and had an incredibly arrogant attitude asking ME what the plan was and offering delights incredulously such as “ what are you worried about I deal with kids like this all the time” “ why do you think he needs a bed on PICU, we won’t be booking a bed, this is a straightforward operation he will go to a ward” and “no there’s been no big planning meeting and if there was you wouldn’t be included anyway” and a final “are you ok mum?” by the pre op nurse. Of course my response was that I wasn’t ok but instead of getting angry and annoyed I did my typical and became frustrated and upset instead. The times Nate has been most at risk has been when people assume things about his condition and his health and have refused to ask for advice from health professionals who know him best, or actually listen to us.
Also I’m not your fucking mum.
It was implied that the op would be performed late summer, but this didn’t happen. More chasing lead to an unexpected hip appointment with a different surgeon. I’ll be honest, the idea of another appointment pissed me off. But we attended and met the surgeon and a different anaesthetist. The appointment was a long one and they described in detail their plan to do both Nate’s hips if he was stable after the right one was sorted. It was clear from the start of the appointment how much thought and research had gone into this plan. It took into account what Nate likes to do, his level of mobility and plans for this, and his ATRX. The brutality of the surgery, risks, and recovery meant whether to go forward with it was a huge decision.
The most important thing for us has always been to give Nate to best quality of life we can. Quality of life for someone with PMLD and complex health issues is often something society does not understand. A huge amount of work was put into a great document “PMLD standards” that even health and teaching professionals remain unaware of ( and I include OFSTED in this).
For Nate good quality of life means being able to be close with his family and friends, including lying next to his friends and rolling about and enjoying school. Having new experiences and being out and about are things he loves. Watching football - his dad and sister playing, is a massive part of Nate’s ( and my) weekend. The more dramatic the better especially with a bit of choice language thrown in. However, we had reached a point where taking Nate anywhere was difficult as he became uncomfortable, and wasn’t able to remain in his chair very long. Or any position really. His hips were affecting his quality of life.
In everything we do, every decision we make, we weigh up risk. Is it an “acceptable risk”? It’s why despite his dodgy health we took him to Florida, on a cruise, and regularly around the country. He’s been on “planes trains automobiles… and boats”. It takes planning, and sends my anxiety through the roof but it’s worth it. But these are all fun things, the risk/ benefit scales tip towards the benefit due to fun. Massive operation, not so much. But we knew it was something that long term would be worth doing.
On Thursday while Nate was in his incredibly long surgery- due to his mangled right hip, I had far too much time to think, I mean agonise, over whether having the surgery was the right decision. Luckily Michael and I have always been on the same page about Nate and what he needs, as disagreeing on this would have put a whole other dimension to the decision game. We kissed Nate at 10am as he went to sleep and didn’t get to see him again until after 9pm in PICU. We managed to escape PICU last night and are now on a ward but Nate keeps spiking temperatures and his infection markers are up so treating with antibiotics. He hasn’t such a big op before, and it’s difficult to know what is just him recovering and healing, and what’s problematic. As a result the pain management plan of epidural is scuppered as it needs to come out. So we now we have a new set of issues as morphine and derivatives will throw off his breathing, and NSAIDs cause stomach bleeds. It’s strange having a conversation about drugs and whether he’s had different ones before then realising that actually Nate has been pretty stable on his meds for a long time, and has been well managed. Oh also we picked up the strangest compliment- that there’s not a mark in his skin ( i.e. pressure marks)
With the temperature spike in the night came the most random thing. The Dr who came to take his bloods was a bit excited to see Nate having previously worked in a lab with Prof. Gibbons in Oxford studying the ATRX gene! This was the first time since becoming a Dr she had met anyone with the condition! Absolutely bonkers. She was asking about numbers in the country and had we met anyone else etc. She went off to fire Prof. Gibbons an email! More info on ATRX gene research below.
So the plan for the weekend is to push through, try drugs, manage the pain, and treat the infection.
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