Collect life-threatening illnesses

Wow. Wow. Wow. Wow. I've ALWAYS loved Scotty Hamilton, but this man just nailed my thoughts exactly! We're all going to fall. That's life. Enduring life WELL looks like picking ourselves back up, brushing off the fall, and starting over again. Sometimes this is easier said than done, I know. Believe me! I know!! But wallowing in self-pity isn't helpful and in my case, it literally makes the pain worse. If you need a pity party, set a timer and when it goes off, move on with life! Get up. You've GOT this!

Friends bonding with brain surgeries...

 TRUTH

My darling friend Catherine Hughes had her shunt revised yesterday in Phoenix and I had my revision done on Wednesday. We were playing the "who feels the crapiest" picture game and that's when we realized we had more in common in this picture than just a new shunt. We're both icing our incisions. And that tells the story of our post-op lives more than anything, I think. 🤕In the  In the 

Hospital Day 11

After losing so many battles this last week, it was all I could do to stay somewhat sane yesterday. I just wanted to go home and be with my babies. We'd been at the hospital eight days longer than anticipated and I was DONE! This quote so perfectly summed up my emotions. And physically, yesterday was the absolute most painful day of this ordeal since headaches started April 24th. A CT showed that my brain is swollen, I had air pockets hroughout my brain, and some intraventricular bleeding. All of those things can add up to a pretty craptastic headache, but they aren't necessarily unusual. I had he same thing happen in June, but not the revision is August. But things calmed down and I had a GREAT night and get to be discharged today with as needed follow up over the next several days, weeks, and months. But just to catch you up, here's what I been doing...

On Wednesday, Oct 12th, I came to the UofU hospital because my six-week old shunt was failing. We assumed my shunt had clogged and wasn't draining as much CSF as it should have been. The surgery would've lasted 15 minutes to replace the broken shunt and I would have been discharged the next day.

But the shunt wasn't clogged. It was obvious, though, that the shunt pressure valve setting wasn't allowing enough CSF to drain, so I still needed surgical intervention. And instead to using whatever random shunt and set it to whatever random pressure setting, we decided to run some intracranial pressure tests for a week to see the pressure at which my brain is happiest so that if I had to be shunted again, we'd know exactly what would work best.

Three days ago, we all pow-wowed and decided to take a look in the brain. The pediatric neurosurgeon who performed the last surgery I had in college that kept me brain-surgery-free for 13 years (and based on my shunt history, y'all understand why that 13 years was such a big ol' deal) came to assist my adult neurosurgeon during my surgery. Unfortunately, there is a bunch of scar tissue behind the hole made 13 years ago that is preventing the CSF a natural passageway of flow. My basilar artery is also behind my third ventricle and one nick of that vein and the surgery would have been over with a quickness.

Soooo, using the ICP data we collected last week, I was given a new shunt that we're hoping will last a lot longer than the last five.

The shunt was initially working great for several hours after surgery, but by Friday morning, we knew something was wrong. Thankfully it's an easy fix. They used an external magnetic device to adjust the pressure setting and I can also slow the flow of CSF by laying down flat. This will need more fine tuning, but I can do that on an out patient basis.

Soooo ... Buh-bye hospital! I'm coming home!!!

Hospital Day 10

#hydrocephalus #ETVshuntCombo #brainSurgeryRecovery

I stayed in the hospital a day longer than planned to help get some semblance of control on my pain. Yesterday was seriously one of the most painful days (physically and emotionally) since all of this began in April. And the resident in charge Wednesday night/Thursday morning kept telling me that my surgery was complication-free and that I was exaggerating my headache pain. He said Tylenol (500mg) was more than I needed for my imagined pain.

Obviously, this resident and I had some issues yesterday. Again, it goes back to what I've been saying since April: YOU are the expert with your body. YOU know it better than anyone else. When something is feeling "off," be aware and be your own advocate even when every dr questions your sanity.

And sure enough, yesterday's CT results showed that my brain is swollen, it's filled with pockets of air, and I have some intraventricular bleeding. All of that adds up to a ridiculously awful headache that took all of Thursday and most of last night to begin to get on top of the pain. Thursday was a really rough day. Like, seriously one of the worst (in regards to pain and emotion) these last several months.

Again, thank you for your prayers! Each of your pleas on my behalf to our Father in Heaven is blessing me and our family with strength, courage, and determination to get through another day.

Scar Tissue and Brain Surgery

I just got back to my room. The external ventricular drain that I've had all week was removed. According to my husband's report, the neurosurgeons (my adult nsg & the pediatric nsg who did my original ETV 13 years ago) said that my ETV was still wide open with possible scarring further down, but they felt it was too dangerous to proceed past my basilar artery to remove anything. And I'm totally okay with their assessment and treatment plan. Kinda sucks, but there it is.

And alllll the data we collected this last week with the external ventricular drain (EVD) that was measuring my intracranial pressures helped us find a shunt that will work better (read: LONGER) than all my previous shunts. I now have a Codman Hakim valve with an antisiphone device that will provide a wider range of pressure options.

They will keep me overnight and get a CT in the morning. If all looks good and pain is well-managed I can go home tomorrow afternoon.

shunt ETV combo

Eeeek!!! I've been BEGGING for this surgery since May 21 and now it's on the OR schedule for tomorrow! Woohoo!!!! And I'm POSITIVE everything is working out because of your prayers and faith! I have the most wonderful friends and family! 💕

13 years ago TODAY (I thought it was on the 10th, , I was discharged from Primary Children's Medical Center after Dr Brockmeyer did my ETV (poked a hole at the base of my third ventricle to allow CSF to flow throughout my brain and body compensating to changes in pressure naturally). And Dr MacDonald is going to have Dr Brockmeyer help make that hole wider, thus allowing more CSF to drain through the fenestration.

And now I need a nap because I've been WAY more excited and this externalized ventricular drain can't handle it. We'll keep you updated!

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!

13th ETV Anniversary

In other news, today is the 13th anniversary of the endoscopic third ventriculostomy procedure that kept me shunt-free for 12.5 years. I'm pretty dang emotional about that. We don't know why it's not working or why my CSF isn't getting absorbed in the brain. Regardless, it's a pretty bitter-sweet day for me now that I'm shunt-dependent and that these shunts keep failing.

We finally got home a few minutes ago from the UofU ER. I couldn't stay on top of my pain levels and had to get help. They were incredibly nice and accommodating and listened to both of us very carefully. This was probably the best experience I've ever had at a urgent or emergent care facility. My symptoms (craaaazy bad headache, nausea and vomiting, double vision) and the scans confirmed to everyone that the surgery scheduled for Wednesday is the best next step. So they gave me meds to keep me as comfortable as possible until then.

We are SO blessed to have each of you in our life! Love you all and now I'm going to sleep.... 😴💤

Emergency Department for Pain Management

My brain didn't want to wait until my surgery on Wednesday. The pain got psycho crazy this afternoon and I kept dry heaving. So I finally called "uncle" and decided to let the drs at the UofU hospital help me manage the pain. The Dr is trying his best, but we all know CSF pressure headaches really won't go away without surgical intervention. At least the nausea has calmed down. Sheesh. Hydrocephalus is dumb.

Peacefully Enduring

It helps when you have an amazing support network who fill your cup with strength, courage, and determination. I'm blessed to have all of you in my life!

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.

Awesome Husband

Homecoming football game last night for Copper Hills High School. The cheerleaders roped their vice principal, Mr. Varga, into doing something he hasn't done in yEaRs and the students LOVED it! What a goof! Haha!! The students should challenge him to a hand stand contest at the next game because he'd totally win! But really... I love the student body at CHHS!! They have a TON of school spirit and really show up for their teams! #MyHusbandIsAwesome #GrizzCheer #Copperhillshigh