As we’re getting over our colds, we went back into London to see our neurologist. Which is to say, for the first time since he’s been seizing we finally have a neurologist instead of consultants passing the buck (so frustrating).
Here’s the thing: the neurologist didn’t tell us anything new about Kai’s seizing plan. The plan is still the same. What we did learn are new snippets that other consultants didn’t tell us.
Like that our metabolic consultant told our neurologist consultant that Kai is only expected to live five years or less, but he never told us that.
We also found out that his developmental level is at that of a four week baby, rather than the fourteen weeks he is. No one told us that either. We heard it as aside when symptom management nurse was filling in our neuro guy.
We also found out from the neuro consult that babies aren’t likely to survive with burst suppression eegs – shown on Kai’s very first eeg way back in NICU. No one told us that that was what burst suppression signified. We knew it was bad, and we knew that Kai’s condition meant a rubbish survival outlook, but we didn’t know that it was because of what was happening in his brain right that moment.
I’m so frustrated that this is how we find out information about Kai – through eavesdropping. All doctors treat us like this – they talk amongst themselves and attempt to ‘protect’ us I think. Fuck that. I don’t want protection. I want it straight and I want all of the information. There is no one more involved in his care. I am the expert. I am the one that knows his meds. I am the one that decides what he does and what battles we fight and what care he gets.
So if I am the one who does all the things, and decides all the stuff, why am I not being told all the things? Why are others deciding what to tell me and what to not? How am I meant to make any informed decision when we don’t know everything, or even the significance of everything?
On the other hand, I half think that our medical team can be hit or miss. I’m not into our metabolic consultant telling me that there are no clinical trials when I ask about NKH management (it wrankles when I’m facebook friends with the very clever researcher leading the way with NKH treatment). I’m not into that neuro consultant that told me there was no point to treating Kai’s seizures because we couldn’t manage the underlying cause. I’m over doctors telling me about the doom and gloom, but that doesn’t meant I don’t want to hear every single scrap of information they have about my son.
It bothers me that we’re not included. There is a whole system that they’re on that we’re not included in. It’s as if the entire Medical Team Mikaere was on facebook except me and Sam.
Anyway, the plan is the same. Wean the phenobarbital, switch from the iv in his leg to an oral version, and then we wean. C’mon little baby, we love you so much. I can’t help but feel the less meds you’re on the better.