last Wednesday's surgery was just the first surgery I needed while I'm here at the UofU. Neurosurgeon's tend to want answers when a patient's shunts fail so quickly. So I have this extraventricular drain (EVD) draining my excess fluid just like a shunt would, but I get to see my spinal fluid in a little bag on my IV stand. It's equal parts really cool and really gross. The EVD measures how much CSF I drain throughout the day and night and also my internal intracranial pressures. The idea is that this will allow my neurosurgeon to choose a shunt and setting that will more closely match what my brain actually needs.
But having an external catheter increases the risk of infection a MILLION times more than giving the patient a shunt and closing the inside of the brain with stitches. This means that I'm limited to two visitors at a time and they all need to be over the age of 14. In other words, this really stinks for me and my kids!! Thank heavens for FaceTime and Skype.
My neurosurgeon is still trying to decide what to do for my second surgery. He can use this EVD data to choose a shunt that works better for me, or, he can choose to involve one of the pediatric Neurosurgeon's just down the hill at Primary Children's Medical Center and have them take a look at my endoscopic third ventriculostomy (ETV, the hole they made at the bottom of my third ventricle in 2003 that made me shunt-free for almost 13 years). We really rEaLlY want Dr Brockmeyer (the nsg who did my ETV) to take a look and make the fenestration wider or to remove any scar tissue building up down stream that is preventing enough CSF to drain. Whichever route he chooses, this surgery won't happen until Wednesday or Friday, at the earliest.
In the meantime, this EVD prevents me from moving around or sitting or standing without help from my nurse because the drain has to be level to my inner ear or else I over drain with a quickness and risk possible slit-ventricle syndrome or intracranial hemorrhaging. This has been quite the adventure, that's for sure!
Thank you for sending me funny jokes and memes. It's helping the time go faster. I've been sleeping better than I have since April. My nurses are all freaking AMAZING!! I love that i get to have surgery here. I mean, it totally stinks that I have to do this, but the nurses and staff here are working hard to keep me happy, pain-free, and distracted by the weight of this trial. It will be over soon.
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