Ouchie!

We're on our way home! I have such HUGE respect for my friends with shunts!! The last 23 hours have been some of the most painful of my life, but I know that I'm in good company in our hydrocephalus community. And at least now we know what's wrong and recovery will only last so long. I'm grateful for all of your prayers! I promise you that Heavenly Father heard each and every one of them and has blessed our family with an abundance of comfort. Love you all!!

Some weirdo awesome friends of mine wanted to see pictures of my head. I don't want to gross everyone out so I'm putting these further down the page. You're welcome to look, but it's pretty gross...

The shunt system is at the top of my head. I also have an incision behind my right ear. That gave them an access point to help feed the tube down my neck. And then I have the incision in my abdomen where the catheter ends.

  

Hip hip HOORAY! It's SURGERY DAY!!!

UPDATE FROM GLEN: Kelly is out of surgery... First indications are that it was successful. The ETV fenestration was wide open. An adjustable shunt was placed with a subcutaneous drain to the abdomen. We'll stay at Intermountain Medical Center overnight, get a CT in the morning and possibly home by tomorrow afternoon. 

Not exactly the ideal outcome we were hoping for, but we knew going in that there are a lot of unknowns and what we ended up with was one of the possibilities. Your continued prayers are appreciated. We Iove you all and appreciate your thoughts and concern for us!

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Day 0 - I am overwhelmed with gratitude this morning! Your support, well wishes, and prayers have made today all the easier. I wanted you to know that I looked at every 'like' and every comment from my post yesterday and spent a moment thinking about each of you! My heart is so incredibly full of love and peace because of you!

It took me about an hour yesterday to find this image, but I really wanted to share it with all of you today. When I'm told that someone is praying for me, this is what I imagine: an army of heavenly beings watching over and protecting me and offering me peace of mind. I'll be fine, everything will work out perfectly well today, and the road to recovery will be short and smooth.

Glen will post on my behalf after my surgery this afternoon to let you know how I'm doing.

Love you all!

Ummm...

UPDATE: My surgery is scheduled for tomorrow at 2:30pm. Hooray! 


1 or 9 day(s) until surgery - First of all, I am so blessed to have incredibly awesome family and friends!! You are all helping me to not just endure this trial, but to endure it well, or at least better than I would if I didn't have my very own beautiful army of supporters combining their spiritual strength to keep me afloat.

Secondly, my surgery is scheduled for the 24th or tomorrow! I received a call from my neurosurgeon's office last night letting me know that they are 90% sure that they can fit me into the O.R. line up for tomorrow. But if not, then the 24th it is. I will find out for sure later today.

And lastly, I've received dozens of texts, FB messages, and phone calls asking me what can be done to help. The best thing anyone can do for me is to continue to pray for me and my family to feel peace, strength, courage, and determination through this process. And please pray for the neurosurgeon, Dr Joel MacDonald, to have a steady hand and clarity of mind as he makes decisions based on what he sees in my brain.

My heart is so full of gratitude for each of you.

Whew!!!

My surgery is scheduled for June 24th with my #1 neurosurgeon. Insurance has approved everything and everyone at an in-network rate. Whew! I'm convinced this wouldn't have worked without all of your prayers. Thank you!!

"Up with your chinny chin chin!"

Day 50: I have that "Chin up!" song from "Charlotte's Web" stuck on repeat in my head... I don't know if any of this will make sense, but here it is...

- My neurosurgeon is not considered a preferred provider with my insurance, but other than the pediatric neurosurgeon's at Primary Children's, there aren't any doctors in the IHC network who can do this surgery. We thought there was one who could, but we found out yesterday that he doesn't feel qualified to do it and turned down our request for his help. His boss, Dr Peter Maughan (to whom I'm 90% sure we're related because my third-great grandfather is Peter Maughan), is reviewing my case and my appointment with him is set for July 19. Yes. JULY. And this is the same surgeon who told my pediatric neurosurgeon friend last week over a few rounds of golf that he doesn't feel qualified to do my surgery!

- My neurosurgeon's billing/insurance team were supposed to start the process to have him approved as in-network three weeks ago, but they didn't submit the paperwork until last Thursday. It might **MIGHT** get approved today, but not in time for this morning's surgery.

- We considered having the surgery anyway and hoping we could appeal after the fact, but that's roughly a $15,000-$20,000 gamble and a little to high for my comfort.

- If my insurance denies my neurosurgeon as in-network, then we will appeal the decision. We don't think it would be difficult to get it approved the second time around now that we know the other adult neurosurgeons in the IHC hospital system don't feel qualified to redo my ETV.

- Yesterday we started exploring the idea of having my pediatric neurosurgeon do this operation at Primary Children's, but it's a long shot. It would be AMAZING if they'd allow it, though!!

So here's to more waiting and praying and hopefully not more crying. The latter only makes my head hurt worse. I never imagined we'd have to deal with the runaround like this. It's absolutely ridiculous, but the alternative is receiving another shunt and I'm not going down that road unless we absolutely have to.

Recharged

Day 49

Yesterday was such a needed day of rest! I was even able to make it to church for a little while. Unfortunately the magnitude of what's going on hit me hard and I struggled with my emotions... I thought about the miracles and blessings we've seen so far and my heart was so full of gratitude! But I also thought about the seriousness of the procedure and how it will affect so many systems in my body! And I'm still trying to be okay with the idea that I might need to be shunted again. Regardless the procedure they end up doing, I know from experience that recovery won't be easy, but it'll be better than the pain I'm in right now! I was also overwhelmed yesterday by the love of our ward members. So many of them gave me hugs and well wishes and wanted to know how best they could serve our family. I'm telling you... Our ward is awesome!

And now it's Monday and I'm recharged and ready to fight the red tape again! I'm scheduled for surgery tomorrow (Tuesday) and we want to make sure my neurosurgeon is covered as an in-network provider, but that requires his billing/insurance office to actually do their job and submit the paperwork. Once they do, I've made friends with a gal who works in our insurance company's pre-authorization department and she's ready to get the request processed as soon as she gets the paperwork from my neurosurgeon's office (which was actually supposed to be submitted three weeks ago, but who's counting??). Pray for miracles, my friends, because this could all be over very soon!

In other news... I'm a human barometer. Holy headache!

The Sabbath Is A Day of Rest

Day 48

I'm grateful for the Sabbath Day. Ever since my mom flew into town, every day has been a day of physical rest for me as we get everything lined up for brain surgery #5. But I love having a day I can set aside from the other six to focus my thoughts on my Savior, Jesus Christ, His Atonement, and what that means for me. I know that through our Savior, each of us can experience peace and comfort no matter the circumstances. Happy Sabbath!