UofU Hospital Stay Day 6

#Hydrocephalus #ItsOnlyBrainSurgery #HydroStrong#WeveGotThis #ShuntETVCombo

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.

Middle of the Night Education

4:00 am and I'm sitting here in my hospital room wide awake helping a nursing student understand intracranial pressures and the physics behind extra-ventricular drains using the one coming out of my head as the example and teaching tool. And, as it usually happens, I'm the one learning the most.

External Ventricular Drain

Happy Birthday James!

  

It's this little guy's sixth birthday. My heart has broken a bunch of times this week knowing that I could possibly miss James's big day because of my brain not being fabulous! And now I'm quarantined in a part of the hospital that doesn't allow kids under the age of 14 to visit. I wish the timing could have been better, but the sooner we get my brain figured out, the better momma I can be for my kiddos and especially for this birthday boy! 

Thank heavens for Skype! I got to participate with my family for James's birthday! We did blowing out the candles and opening presents together. That was fabulous and makes my heart happy! Thank you to everyone who brought treats and presents to James and the kids today! He said he felt very special all day long. Happy birthday James! Love you!!!!😘

Intracranial Pressure

So this happened today. My six-week old shunt wasn't helping my brain lately which meant one of two things: (1) there was a blockage somewhere the shunt system preventing enough spinal fluid to drain, or (2) the pressure setting for the shunt was too high or too low and over/underdraining my CSF. Either problem requires brain surgery. Again. For those of you keeping track, this was my third surgery since June and my seventh overall.

And as it turns out, the shunt was overdraining which is crazy because I totally thought it felt like it wasn't draining enough.

The plan was that if the shunt was clogged, they'd simply ("simply" for brain surgery??) revise the shunt system and is be on my way just like the surgeries in June and August. But since it was a problem with the pressure, we decided to use an external ventricular drain (basically like a shunt, but on the outside on my brain). I'll have this EVD for a few days as we use it to try to figure out the pressure at which my internal CSF pressure feels best.

In the meantime, Glen and I are experimenting with the physics behind it all. It doesn't take much to entertain us these days. And yes, the fluid you see in this video is my cerebral spinal fluid. Totally gross, but oddly very interesting!

Recovery Day 36

EDIT: surgery is scheduled for Wednesday, Oct 12

I met with my neurosurgeon this afternoon for my post-op appointment and it turned into a pre-op appointment. My "new" shunt got old really fast and isn't working correctly. We just aren't positive WHY it isn't working...

(1) The shunt system might be clogged somewhere in the valve itself or in the catheters. My neurosurgeon will know when he inspects the shunt system in the OR. If it's clogged, I'll get a new shunt and be on my way praying that we can wait a little longer before that shunt fails.

--OR--

(2) The shunt system might just be at the wrong setting preventing enough CSF to drain. If this is the case, then I'll wake up in post op with an external ventricular drain (EVD) coming out of my noggin and it will stay there anywhere from 2-10 days while we try to figure out the pressure setting that gives me the least amount of pain. Once we have that number, my neurosurgeon will "install" a shunt with that pressure and then I'll be good to go!

So... yeah. We don't have a surgery date yet thanks to the initial insurance red tape we have to cut through, but it better be soon because these headaches are getting pretty psycho. It's most likely surgery will be this Wednesday, but I'll let you all know soon. Sheesh.