A matter of faith...

I've always been taught that faith is a verb, a word that describes the action of believing in that which is not seen but is real. So when I say that my body is exhausted after this summer of surgeries, it's because all this exertion of faith that everything will work out for my good has left me physically wiped out! But the cool thing about faith is that it may exhaust you physically, but it makes you super strong spiritually and emotionally!

God is at the helm. He knows the trials we need to face in life to help us grow into the sons and daughters He knows we can become. I'm just hoping that I can grow spiritually by getting to read about the next trial instead of living through every pain-filled moment the next time around. But if not...

Struggling

Day 45

I'm struggling. I know everything will work out for our good, but this process has been absolutely ridiculous!

When I met with my neurosurgeon 16 days ago, we all came to the understanding that I needed surgery, but because it wasn't emergent, we had time to get an MRI and have the surgery preauthorized by my insurance company. My surgeon said they'd start the insurance process right away.

I got the MRI (which I swear took an act of Congress!) but they didn't do a flow study of the CSF to see if the ETV was still open, so it was pretty much a waste of time.

And my neurosurgeon's billing team didn't start the insurance preauthorization process until two days ago. Yesterday afternoon they told me that my neurosurgeon is only covered by my insurance as a pediatric neurosurgeon at Primary Children's Medical Center or if he performs emergency brain surgery on a trauma patient through the ER at Intermountain Medical Center. After talking with my insurance company and asking why I was told he was a preferred provider when I asked them about it 20+ days ago, they apologized, but it was more of a "sorry, not sorry" apology.

To say we are frustrated is the biggest understatement ever. If they had just started this insurance preauth process 16 days ago when they said they would, we wouldn't have had to painfully wait for the surgeon to get back into town over and over again. And he's leaving for another conference tonight through Monday. Yeah. Awesome.

So today we are attempting two things:
(1) to petition our medical insurance company to approve my neurosurgeon to do this surgery because he has the most experience with the ETV than the other neurosurgeons who are in-network, and if it's approved, my surgery will be this Tuesday. If it's not approved, we'll move on and try...
(2) to transfer my medical records to another neurosurgeon (my #2 choice) and have him perform the surgery.

In the meantime, I'm trying to navigate this entire process with all my symptoms of ETV failure. It seems to be a much slower process than my shunt failures that required immediate attention. Glen is having to make a lot of the calls now because I struggle to say the right things at the right moment. Even this post took more than an hour to write. But I want other patients with ETVs and their families to have these plans in place just in case their ETVs fail. Learn from our experience! We brushed it under the rug as we took care of my other health problems. If we'd had this plan, we would probably already be on the path of post-surgery healing.

I know all will be well. I'm trying to stay positive and all of your thoughts and prayers and comments are keeping me afloat. My gratitude for all of you is overwhelming. Thank you!

Ask for Guidance & Be Patient

Elder M. Russell Ballard of the Quorum of the Twelve Apostles shared this story on his Facebook page two days ago and it's a great reminder of patience and relying on the Lord's will and strength.

I have a dear friend who was dying of severe bone cancer. We served missions in Europe 65 years ago.

“Russ,” he said, “tell God to let me die.”

I replied, “I am not going to tell God to do anything, and neither are you! It doesn’t work that way. But I will give you a blessing to see what Father will have you do at this time.”

He said, “Well, if that is all you are going to do, then OK.” Shortly thereafter, he died.

My point in sharing this story is that we should never tell our Father what to do. I happen to believe that God must have a glorious sense of humor. People order Him around in prayers all the time! I often hear those prayers and think God must smile and think, “Someday they will understand.”

We should ask God for guidance and be patient. Move forward step by step in the plan of salvation and perform whatever He asks you to do. It is simple: have faith in the Lord Jesus Christ and in His plan for you.

Faith - Hope - Happiness

Even facing the potential of brain surgery #5 in the coming week(s), even as my sweetheart and I navigate the waters of life with ever-growing and learning children in our care, even through the murky waters of political and social tensions, we stand tall with faith, hope, and happiness because "[we] can do ALL THINGS through Christ which strengtheneth [us]." #faith #hope #happiness #hydrocephalus #ventriculostomy #failedetv #foreverfamily

Hope & Faith

Day 33. 

Really dizzy and nauseated this morning. Headache isn't too bad. Hoping for answers this morning!



EDIT: So the Nurse called just now to tell me that my dr left for an out of town conference this weekend. He looked at the MRI just before he left to see if surgery was needed immediately. He concluded that I can suck it up over the weekend and that we'd come up with a game plan on Tuesday. Nurse said he acknowledged that my ventricles are enlarged, but not excessively so. Based on our conversation on Monday, I'm pretty sure he'll do surgery because I'm symptomatic. 

My friends on the ETV Facebook page think that the hole is probably still allowing fluid to flow but not as much as it should. They all recommend surgery. And since I'm the only one in the FB group who hasn't had a revision of the ETV (out of 300 who have had at least 2, but mostly 3 or more), I trust their interpretation of the symptoms and brain scans more than anyone else except my neurosurgeon.

Day 30.

Trust the Power of God

Day 27.

God's Timing

All I could post on FB for an update on my headache situation was this...

Day 26.