As if this hospital stay couldn't get worse. Today a paediatric matron I hadn't met before tried to bully me into doing what she wanted me to, despite my very clear concerns. I'm not imagining the bullying either, hey. When it was clear I wasn't going to budge she did two things, both which were so disrespectful I can't even believe they happened.
First, she asked when Sam would be around, so she could 'talk to someone with sense.' Wtf. You can't defer to a partner because you don't get your way. I pretty much told her that line would do her no good. Sam supports the decisions I make with Kai when he can't be there. I rely on this trust, and I told her so. There was absolutely no way she was putting a wedge between Sam and I.
Second, when it was clear I wasn’t budging while my concerns weren’t being met, she told me I was "irrational" and threatened to call social services. She then said she didn't want to, but that I was "forcing her into it", and it would mean "so much trouble" for me.
What. The. Fuck.
There is a power imbalance in hospitals. I'd go even further and say it exists in most medical situations. Medical health professionals are trusted, by us, with our health. They give advice and we're expected to follow it. Generally we trust that they have a big fancy medical degree and lots of knowledge and experience we don't have, and we trust that they're doing their best by us.
Unfortunately for this nurse, when you're faced with an incredibly rare disorder with a large medical team who don't always know what's going on, who doesn't always have the full picture, you get pretty good at standing up for what you think is best, even when it's contrary to what your medical team think.
I can't even begin to tell you how many times Kai has been seizing, and our team have wanted to do one thing (adjust the seizure meds) and I've insisted on something else (adjusting the NKH meds, knowing full well it's the NKH causing the seizures) and been right. I've had a six month crash course in Kai and NKH. I arrive at medical appointments well researched so we can get the most out of our time with our consultants. I know my stuff, and I have no problem sharing my thoughts with our medical team.
So when this matron expected me to roll over and I didn't (despite three days of sleep deprivation and emotion because my baby is in hospital), she resorted to threats and bullying.
There is no place for threats or bullying in a hospital. There is no place for threats or bullying on a children's ward. If you want to build trust, and have a parent trust you despite their concerns - threats are not the way to make that happen.
So, I held my own, ignored her solution and offered a part way compromise. She seemed completely oblivious as to how inappropriate and horrific her manner was. How a 'at any cost' kind of attitude is so detrimental to the relationship between me and her team. To the care and services Kai receives. As she swept out of Kai's room it was with such a self satisfied smug air that the moment she was gone I burst into tears.
I never want to fight with Kai's medical team - they're meant to be our people. The ones who guide us through the hard times, who help us understand when no one else can. We're meant to be on the same team, all concerned with what's best for Kai. But that doesn't mean I'm okay with being bullied. So I raged and cried at Sam. And then I wrote a complaint to the hospital. I slept on it, edited out the passive aggressive, overly emotional bits and sent it.
When our palliative care nurse came in with our community care nurse they were all very up and arms. Very defensive and quick to explain why I was in the wrong. I stopped the conversation short and said I'd already sent a complaint letter and I would hear no more on it. Worse is that now I don't want to interact with Kai's community team. Conveniently, for most things, I don't have to. They missed the last neuro appointment (unheard of, as they've been at every appointment ever) so I'm guessing they're not interested in interacting with us either. The amount of animosity is ridiculous.
I don't think they understand that while this is their job, and sure it's their day to day with all of this hardship - but this is our life. They get to go home after 6pm, and have weekends off. We don't. We live it, day in day out. The three am wake ups and five am seizures.
You'd think there would be some sympathy, some kindness. I've never been more disappointed in Kai's team as I am today.
After we were discharged, one of the matrons we met while we were in intensive care called. She was in charge of managing my complaint and was reaching out.
She'd had statements from the matron and our community nurse, both who had focused on their concerns and my compromise. Apparently they missed the part about threats and bullying, which is what my complaint was about.
Then, she did what should have been done in the first place. She apologised. Several times. She listened to what I had to say. She acknowledged what I said, and was sympathetic. She was kind. Overwhelmingly so. She acknowledged the situation, and the difficulty, and the bullying, said it was unnecessary and shouldn't have happened. That there were better ways. And then she talked me through the next steps.
With one conversation, she eased so much of the tension. I'm still not in love with our community team, but I find comfort that someone at the hospital heard my concerns and it's being raised as an issue. Maybe it's something about intensive care nurses - they're all so kind and sympathetic. I think back to our NICU stay and there are so many NICU nurses I'm fond of.
Either way, I feel better now that I've been heard. Hopefully no other parent will be put in the same situation I was.