On medication

The nurses and doctors talk to me about meds. Going up on the phenobarb and down on the  midazolam  but only the continuous iv, the bolus will stay the same.  Perhaps we'll try the buccal, even though he didn't respond last time.... they come and make these decisions and they're very good about making me feel involved.

Except that I move between stepping forward and stepping back. Before we went into hospital I knew the ins and outs of all the meds he was on. Now?

Now I nod. And hope. I don't understand the significance of what's being changed, I know the overall goals (wean him from midazolam/B6/prednisolone so he's only on the phenobarb and zonisomide) and why (because we're not sure his seizures are B6 related, because the prednisolone is only appropriate at a high dose for a short time and causes high blood pressure etc etc)

But he's just on so many anti-epileptics. So many. I don't know how they work, I don't understand the interactions, I don't know them. We change the levels so much, there are so many moving parts and looking at him, I have no idea what's working and what's not. Add in that almost all of them have a loading time before they work... I'm overwhelmed.

I consider myself a smart person. I know to research the shit out of whatever it is that I want. But this? There are so many meds, so many different moving parts and I'm exhausted. How do people do this? I'm torn between wanting to be up to speed on what medically is happening with my son, and dropping that ball from the pile I'm juggling and trusting the medical professionals.

It's just... the medical professionals don't always know what's best. They don't know NKH, they don't know Kai. Two weeks ago a neurologist pretty much said that there was nothing more they could do with the seizures, that they'd already tried the 'big guns' and Kai wasn't responding. Dick head. That makes me angry, because I know we haven't tried a ketogenic diet no CBD oil. What else is out there that I don't know about that we could try?

But then I doubt myself - is there a reason that he didn't mention the diet or the CBD oil? Is there a reason they will not work, is that why he didn't mention them? Did he not know about them? Or does he think that Kai is so far gone it's not worth trying?

Struggle city. I swing through phases of wanting to trust the medical consultants and 100% not trusting them at all.

There are a few I listen to. The consultants at hospice are amazing, I feel like they're on Team Kai where Kai is the focus. Where they can see him, and understand that NKH has an effect on how he processes. They suggest things, and are proactive.

Some others, like the neurologist who told me there nothing left, he's NOT on Team Kai. He's looking at symptoms and hospital protocol. Or the metabolic guy, now that he's done the diagnosis he's reactive, not proactive. I feel like he knows that NKH has no cure, and dabbles in Kai's care rather than taking the lead.

I think that's why trusting the medical staff is difficult.

Sigh.

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PS: Quick insight into Kai's Medication Regime, he's on a continuous feed of midazolam (into a midline in his arm) and phenobarbital (into a subcut in his leg). He has an NG tube, and orally takes nine different medications every day. Every four - six hours he has at least two of them. At 6pm he has 7 of them. It's very very complex. I can't believe my little baby has so many drugs in his system.

PPS: Still so grateful for the donations. Over £7k now! You guys are amazing x

 

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