A batplan

I met this week with the team who know my son best. There was no mention of the “T” word, and I left feeling less like a neurotic parent with unrealistic expectations than I had done the previous week. 

It was clear that my son’s respiratory consultant was prepared and willing to assist in any training needs, and wanted to support us in any way he could. We trust him. He’s told us some terrible things over the years, and is always ecstatic to be proved wrong. The team acknowledge that Nate does his own thing. He has never responded in expected ways that follow the “norm” and they accept that. They have always been willing to think outside of the box, which is exactly what we need. 

So if we think about the plan itself (which is being written up)

- Nate is getting a new ventilator that will have an additional “emergency” setting with increased pressures that his consultant feels  positive will be able to ventilate him during these scary blue episodes. 

- We will administer 5mg of midazolam and call an ambulance 

- We will use an NPA if necessary 

We hope this will be sufficient to keep alive. He will not return to respite until it can be shown that the emergency pressures and/ or midazolam are enough. 

What I took from the meeting is that my concerns about midazolam were sensible, and that my expectations that people would be trained to use an NPA, were, in fact, reasonable. Midazolam could cause Nate’s respiratory system to struggle but this would be something that we wouldn’t know until another event takes place. We could do a “test” and administer the drug under controlled conditions in hospital while my son was asleep, but that wouldn’t accurately replicate an event while he was in spasm in an extremely deep sleep. Therefore I agreed to wait for the next event at home and treat accordingly. 

“ Did you think you would lose him” my son’s consultant asked. “ BLEUGH” said my brain as it pretended he hadn’t said anything at all.