On conversations with neurologists

By 4th January 2017 4 Comments

I’ve never had such distance within myself before. What I know intellectually and what I feel emotionally are worlds apart, and they appear at different times. We talked to a neurologist yesterday. We sat down with two doctors and a consultant and we discussed the plan for Kai and his not even close to being controlled seizures. We had that discussion where you leverage the long term (because he’s unlikely to have a long term) against keeping him comfortable.

See, the thing with seizures is that you stop them by putting the brain to sleep, with sedation. If we sedate Kai too much, he’ll stop breathing. If we don’t handle the seizures, he’ll stop breathing while having one. We haven’t found the magic spot between the two scenarios, the one where the seizures are controlled and he’s able to wake. In the meantime his body is pumped full of so many drugs. So so so many drugs.

I sat through this not very positive conversation with the neuro team and I was calm. I asked questions about risks and alternatives and what happens if we do nothing like I’m meant to and it all circled back to what is the main goal for Kai right now (read: make him comfortable so he can pass on. I can’t even believe I’m writing that). 

I was calm while talking to the neuro guy. It wasn’t hard. I was logical and asked all the questions I wanted to.

Emotionally? Emotionally I was worlds away. Emotionally I was raging – I felt like we were being asked to give up on our little guy by not trying each and every drug we could. Logic would kick in (again, what’s best for Kai when we can’t cure the underlying disorder causing the seizures?) and each time it did I would rage at how unfair this whole situation is. He’s so beautiful and this whole thing is wretched and so royally unfair. 

I held it all in until we had to leave. Leaving each time is my undoing, as we walked out of his room and down the corridor I cried. So hard, sobbing into Sam’s shirt next to the elevator. The talk with the neuro, watching my little guy seize over and over, the mundane beside sit while we wait for the next seizure. Holding his little hand when he does seize. Having to leave him in the care of others overnight. How does anyone do this?!

What other choice do we have but to continue on? We love our little guy so much it’s ridiculous. I’m scared for him, again stuck between the rock (where he has seizures and has a hard, not fun life ahead) and a hard place (death). I wish for neither of these options for my little guy.

I know that I’m presenting the negative, the fear. Writing it out has been therapeutic. I’m also aware that it’s a bit sensationalist. I’ve opened up our private little world to everyone with an internet connection, which feels quite wrong and freeing at the same time.

We’ve had such an outpouring of love from so many people. Or nearest and dearest, people we once knew and from strangers. I’ve had so many emails and comments and messages that have made me cry (I cry so much now) and just, I think if I hadn’t shared and we didn’t have such a village around us I’m not sure what position we’d be in even now. Plus this way everyone knows and I don’t need to explain anything to anyone. How do you explain this whole situation?

Edit: In attempt to share a few more upbeat things, we made friends with the 16 year old who was in the bed next to us while we were on the ward and, after a hard slog he finally got discharged! High five him! 

Also, one of the nurses took pity on us, and not only did Kai get fun sensory lights for his incubator, but they’re letting me stay over the night for baby cuddles. I am SO excited to not have to leave tonight.

Edit #2: As of this morning we’ve raised £6k+ for NKH research(!!!!). Considering my first goal was set at £250, we are overwhelmed with the support. I feel a bit cheeky asking, but if you haven’t already shared it, would you mind sharing our campaign?

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