Living in the hospital

By 21st December 2016 No Comments

You can tell the one off hospital parents from those that are there regularly. The regulars know the nurses names and have sleeping bags and know how to turn the spO2 alarms off. They’ve already got all the snacks and they’re just… they’re just calm. This isn’t their first rodeo.

The one offs are scared, they worry about the beeping things and they cry in the parents room. It’s heartbreaking. 

Were somewhere in between. I have a sleeping bag this time, for bunking down on the weird single seat pull out bed. I don’t yet know all the nurses names but I don’t cry in the parents room either. I know where to go for a meal or where the good bathrooms are. I have all the meds, and I’m the one that draws them up and administers them. I have a feeling that we’re going to become old hats at hospital visits. 

I think mostly I’m not scared. This visit I know is to figure out what Kai’s new ‘normal brain activity’ looks like, since we’ve started on keppra. To understand if the clusters are going to be the new normal, and to understand if his meds need tweaking again.

So, we had an eeg.  And we’re waiting on results. Hopefully they’ll have them soon. Hopefully, after that we’ll be able to go home!

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