Recovery Day 13

There are days when you get a teeny little glimpse into the suffering of others and you realize your life is beautiful in comparison. This video is... Well, the music is absolutely beautiful and the images are ridiculously heart breaking!! I could only watch it up to a point, took a break for a while, and then watched to the end.

Folks, the sex slave trade is real and over two MILLION children are being held captive and used today. TODAY! If you can, please donate to Operation Underground Railroad so this organization can help rescue as many as they can!

Recovery Day 12

I've discovered a problem... I can't raise my voice without inducing a ridiculously awful spike in my headache pain! This will become a bigger problem when my mom leaves on Sunday. She's been AMAZING with the kids and has kept them busy enough that the potential problems created by our little humans have been kept to a minimum!

Glen Varga will be home for the most part throughout the rest of July, so he can play referee with the kids. But this ability to raise my voice has been a mommy super power!! And I'm not even talking about yelling. That's totally out of the question because I think the pain would kill me. But I've lost the power to use my voice to grab everyone's attention because someone is about to do something ridiculously dumb that will probably hurt someone/everyone else. Or to end a loud argument mid sentence because I say the mommy magic word that shuts everyone up immediately. Or to get all of the potential A/C drainers on hinges closed at once with just a few words projected loudly. And with four little humans, it's physically impossible to be in each of their spaces all the time so that we may converse at a below normal decibel level. And even if it were physically possible, that would be a disservice to my children who are learning degrees of independence as they are taught correct principals and expected to govern themselves.

Captain Von Trapp had the solution, but I'd need a whistle that requires minimal air power. Anyone have one of those?

In other news... That moment you realize your hair part for almost 13 years needs to switch sides to cover up a few newly-created bald spots.🤔 #hydrocephalus#failedETV #newshunt #firstworldproblems

Recovery Day 11

I did my hair and makeup today! Feeling a bit better every day!

This is the shunt that is keeping my CSF in check. It's fun to see the new changes to the shunt systems, especially when I realized that I attended a meeting that showed an idea for improving shunts on a power point presentation ten years ago and those changes are now in my head!!

Codman Certas Plus Programmable Valve

Recovery Day 10

I love the Sabbath Day! Physically I've been resting all the time for weeks and weeks, but Sunday's are a more productive rest for me as I do activities that help draw me closer to my Savior. Several weeks ago, I rediscovered daily journaling as a fabulous way to process the emotional and physical health challenges with which I've been struggling. I've also been spending more and more time in the scriptures as a source for putting life's struggles into an eternal perspective.

Yesterday we learned (the painful way) that I definitely have a time limit on how long I can be up and about without my head feeling like it's going to explode. We're not sure if the shunt is draining too much or too little... The pain feels the same either way. I haven't heard it drain since yesterday morning. But maybe I just can't hear it anymore? It's all so very confusing. And it's in these moments of confusion and frustration that I remind myself that "God is not the author of confusion, but of peace" (1 Corinthians 14:33) and I turn to my Savior in prayer. And guess what? He helps still my soul every time. #BrainSurgeryRecovery #hydrocephalus #ShuntsAreWeird#SabbathDay #HeLives

Recovery Day 9

My neighbors are AMAZING! Friends, the next time a house is up for sale in our neighborhood, you should SERIOUSLY consider buying it and moving here! I love my neighborhood family!!

We've had meals coming in every so often for the last few weeks. It's been a HUGE blessing because that's one less thing we've had to worry about. In an effort to help my kids show their gratitude for these meals, my mom drew these cards for the families who've been helping us and had the kids color them and write sweet messages inside. I took a picture of the card sent home with our friends last night. I'll translate...

"I love you so much! - James Varga - Thank you for bringing us dinner. You're the best."

Be still my heart! I love my kid!!

Recovery Day 8

My first three shunts in college were all placed posteriorly on the right side of my head. This current shunt has an anterior placement on the top right of my head. Not sure how much of a difference it will make, but I was ALL for not waking up from surgery with the back right side of my head completely shaved. Instead I just have a little patch shaved on top where the shunt pressure valve sits and then a bit behind my right ear where they created an incision to help feed the catheter down my neck to my abdomen. When we got home last Friday, my sweet Katie Lynne was SO happy I still had so much hair. She cried and cried every night leading up to the surgery about the potential loss of my hair and was overjoyed when she saw that it wasn’t that bad! 

Recovery Day 7

I can't believe it's been a week since my surgery! It's been an emotional roller coaster, for sure, especially as I remember how much I hate shunts. I mean I really truly hate having this pressure valve and tubing system manipulate the drainage of my CSF. Sometimes it drains too much. Sometimes it drains too little. Either way, I get an awful headache. And when my pain increases, my emotions start to overwhelm me and drag me down a path of ridiculous negative thinking. Crazy emotions are also a side effect of brain surgery. So I've been forgiving myself for this lack of emotional control. It's totally normal. But knowing that doesn't necessarily make it any easier so I simply ride it out until I'm distracted by something else.

I'm grateful for my hydrocephalus support FB groups that have been helping me keep the physical and emotional pain in perspective. One of my darling friends who's had three times the number of brain surgeries as I've had, gently reminded me yesterday that this shunt is working with my ETV to keep me alive so that I can be present with my family and live a pretty normal life. She said it might be a bit more painful, but I'm alive.

Truth.

Thanks for the encouraging words and prayers, my friends. I'm healing more and more every day.

Recovery Day 6

I'm feeling better and better every day! I still spend 90% of my time laying down or sitting up slightly, but at least my vision is just about back to normal and I can read for longer periods of time. My incisions are starting to itch like crazy, which tells me that they're healing nicely. We'll have the stitches removed in a few days. So my plan today is to simply take it easy and sleep and rest as much as I can. Life is good, my friends, and I finally got to wash my hair thoroughly this morning! .


I'm not happy about having a shunt again. At all. I've tried to cry over it but crying raises my blood pressure which raises my intracranial pressure which gives me the worst headache you can possibly imagine. SO, it's time to find the silver lining in the situation and here's part of it: I can hear my CSF draining through the shunt valve! It's SO weird and creepy because it sounds like a cockroach!! Not the scratching you hear in this video, but the vibrating noise it makes. Ewwww!!!! Haha!

Recovery Day 5

Oh friends. I'm filled with all sorts of happy this morning because I'm finally feeling on the mend! About 12 hours after surgery, we suspected that the shunt was over draining, but we waited a few days to see if we were right. And we were. My neurosurgeon's nurse adjusted the setting yesterday afternoon, and I'm feeling SO much better! The incisions still hurt, but icing them is helping. I still get random headache pain that totally wipes me out, but it's not constant. And with my mom here and with the help of my neighbors and friends, I'm able to just take it easy and enjoy the time I have to rest and heal.

Again, thank you for your prayers! We've been on the receiving end of the Lord's tender mercies throughout this whole process and a lot of these blessings have come because of your faith!

In other news... British scientists are ready to invent a cure for hydrocephalus

I think I'd be more excited about this article if...
(A) it didn't have as many (any) grammatical errors,
(B) it didn't imply that British scientists weren't ready to invent a cure for hydrocephalus before now, and
(C) the scientific explanation made any kind of sense.

But by all means! Feel free to invent a cure!

Recovery Day 4

Recovery Day 4 - Social media has been a fabulous life line for me before and after my surgery. In the last ten years, I've become friends with so many individuals and families who face hydrocephalus every day with such courage and determination! Their knowledge and strength have been leading me forward in this recovery process.

I always knew having a shunt again was a possibility, but I can't believe how sad I am that I need one again! I had hoped my ETV would manage my hydrocephalus for life! And if it had failed, it would simply be a matter of reopening it. No big deal. Unfortunately, I knew that wasn't my luck from the second I woke up after surgery. I seriously processed those first few minutes after waking up from the general anesthesia like this: "I'm awake! Awesome!! Did they use stitches or staples? Please be stitches. Staples hurt a ton when they have to pull them out. And holy crap!!! I have a shunt again. Noooooo!!!" and then I started ugly crying which set off all sorts of alarms and whistles on the machines attached to me and got the attention of all the nurses. And guess what?!! The crying hurt my head SO much that I've been trying not to cry ever since which is really difficult to do, by the way, because my emotions are alllll over the place right now.

Isn't that just so strange? And that's why I'm struggling at the moment... Shunts fail. Allll the time. I had three fail in twelve months the first year I was diagnosed. And now that I have a shunt again, in our hydrocephalus world, we know it's just a matter of time before it stops working and I have to get a new one. But that's as far as I take my thought process before I remind myself to let go and let God lead and guide me. He knows the plan for me and it's up to me to do whatever it is He asks of me. And that's when I plead for more strength, courage, and determination and then get off my knees and do whatever it is that needs to be done. And at this point in the recovery process, all that I need to do is sleep, sleep, and sleep some more, hug and love my kidlets and Glen. We've got this. #hydrocephalus #failedETV#itsashuntlife #letgoletGod #brainsurgery

So I'm trying to move forward while still taking everything day by day, sometimes hour by hour. And I'm leaning heavily on the experience of my friends who have exponentially more brain surgeries under their belts than I do. Five surgeries is, oddly enough, a really low number in our hydrocephalus community. Isn't that weirdo? If someone who has hydrocephalus for whatever reason tells me that they've only had five or six brain surgeries in 20 years, then I'm going to be astonished and give them an excited, lucky for you high five! And if someone who's had hydrocephalus for whatever reason tells me that they've had 124 brain surgeries in 20 years, then I'm going to be less astonished and ask how many shunts they've gone through in those 100+ surgeries.

In other news... My aunt came for a visit today and our three-year-old told her, "My mommy's head has a hole in it." Out of the mouths of babes...

I love this message and I feel like this is a good post to share it on...

Happy Father's Day!

Recovery Day 3: Happy Father's Day Glen Varga & Chuck Conover!!!

Last year on Father's Day, Glen and I spoke in church about choosing to believe no matter the circumstances. I had a difficult time preparing my remarks because I kept feeling the need to share my hydrocephalus story and I really didn't want to. Obviously the Lord knew what needed to be shared because we would never have guessed that a year later, I would need the help of my ward family as I healed from brain surgery #5. I actually read my talk again this morning and found myself trying not to cry because I need those words today as much as I apparently needed to share them a year ago.

The healing process hasn't been super fun, but I think we're right on track despite all of the aches and pains. My incisions sting like crazy, the distal catheter (the one that runs from my shunt to my abdominal cavity) is really tender and every time I stand up, I feel a horrible stretching sensation, like it's going to be pulled out of place, and I'm still getting ridiculously painful headaches when I stand up for any amount of time.

Even as I struggle, though, I am incredibly grateful that I'm on the "over with" side of brain surgery! My vision has improved a ton, the dizziness has almost completely gone away, and I'm much more aware of what's going on around me instead of living in The Land of Brain Fog.

My family and I are being blessed in so many ways!! Thank you for your prayers!

In other news...

Lesson learned. If you're listening to meditation music to help you relax enough to take a nap, do NOT use your phone as the source of the music.

I find it pretty ridiculous, though, that the phone call that just interrupted my much-needed nap was from Intermountain Health Care wanting to know about my most recent stay at their hospital. Grrrrrr...

It might pass like a kidney stone, but it will pass

Recovery certainly hasn't been fun, but I'm a lot more comfortable at home than I was in the hospital. Thank you again for your continued prayers! This too shall pass...




In other news... The National Hydrocephalus Association Conference 2016 is in full swing in Minneapolis. Everyone I texted or FB messaged received a request from me that they each give Dr. Walker hugs throughout the conference. He's my hero and apparently the hydrocephalus community agrees. My darling friend sent me this...