The BIGGEST update I hope to ever make....

The Johns Boys in Oct 2016

I am a little sad that this page hasn't been updated with the events of my 2016! Its been quite the roller coaster! I will do my best to update in all of the area's that I can remember(I am struggling in the memory department these days, I guess 4 craniotomies will do that to you)and then I will send you to The Bee Happy Movement Facebook Page www.facebook.com/thebeehappypage to see all the videos, and posts that I have made there. It was easier for me to pop on there after a big surgery, or following a disappointing medical appointment, and talk about my frustrations. I have wanted to always be open, and vulnerable during this time, to use it as a platform to do good, and hopefully inspire someone else who was going through a hard patch, to "bee stronger" and "bee better. My hope is that as these days become a distant memory for me, those who see this blog, and who are members of the Facebook page, will say it has helped them, even in a small way. 

After several lumbar punctures, and hours in an MRI to confirm CSF LEAK in JAN 2016!

So starting off 2016, as I remember it, we were told that I needed to go see a neurosurgeon. My sinus doctors felt like they had done all they could, that they weren't going to be able to stop the leak. Looking back I wished they would have said that after they had failed with the 2nd surgery, or the 3rd. They openly told me they had never had anyone require more than 2, and they attempted 5 sinus flap repairs to stop my csf leak. I fought them hard on the idea of going to a neurologist. I knew deep down it would be a hard battle, yet I didn't think it would be as hard as it turned out to be. After fighting with them over, and over, I finally saw the neurologist. 

The other problem that came up, which I am still quite upset about is that in 2016, my insurance decided that they would change EVERYONE in Idaho to a new plan, that made me out of network for The University of Utah, which is where I had received all of my care. They didn't say a word about the change, until it was too late for me, so I had to switch to Intermountain Medical Center in Murray Utah. I honestly believe that THIS change will be known as a reason I am still struggling, and undergoing surgery, after surgery. I don't tend to hold on to things that have happened in the past, but I am still angry about this one. I did however "Just Keep Swimming" as little Nemo on Fining  Nemo would teach me so many years ago. 

I finally got an appointment with Dr. Macdonald. A 20 year veteran in the neurosurgery field, and in our appointment he pointed out that I actually had a few csf leaks in my skull base, and one of them would never stop until I had this craniotomy that I had been dreading. As soon as he said that, I was in, I have every single day promised to do whatever I could to get back to full health. I have been scared, and experienced more pain than I ever had in my life, but in my mind it was a small price to pay to get better for my kids, for my family, and to become an even better person through it. I agreed to it, and thought to myself....how can I make THIS hard thing I am going through a GOOD thing....and it was just then that I heard of a young mother who had died. I was instantly grateful that even though I was pushed to my brink, I was still alive. I was still given this gift to live, and become something. It was almost as if the idea was planted in my mind, and we pushed forward. I told my supporters, and the people on my radio station that if we could raise $10,000 I would have Tayt Anderson(the little boy who needed a new heart, and Ellen's Boyfriend) shave my head. First of all the idea of shaving my head is something that I would never consider if I didnt have too, but it was for a good cause. I through a huge number out there, and WE HIT THE GOAL! A beautiful family had $10,000 to help them with the huge burden of funeral expenses, and we shaved my head as promised! 

Tayt Shaving Dusty's Head!

The awesome thing about Tayt, and his beautiful mother Chrissy, is when I met them many years before doing a Primary Children's Radio-thon. I developed a beautiful relationship with Tayt. He touched my heart. The second I saw this magical little dude, who had been fighting for his life, he changed me. I thank God that he allotted that to happen, because when I very first got sick, I knew I could choose to "Just Keep Swimming" and to make a difference through my trial. And so The Bee Happy Movement, and my positive attitude was created. I am so grateful that this young man shaved my head, and then helped me have the courage to have my first craniotomy. 

The other thing that gave me the courage to go, and do as I needed to do was the people around me. I have some incredible supporters, and they started to help me push The Bee Happy Movement. I had this crazy idea that on the day, and time of my surgery, we would have people holding signs to remind people to BEE HAPPY! People from all over Idaho, and really several other locations in the United States!

In fact as my good friend and I pulled into the hospital, there were like 30 people holding up signs supporting me! Telling me to BEE HAPPY, and to BEE STRONG! Another strong friend of my Kayla Adams was there every single day with me in the hospital, every moment she stood by...

Day of Surgery - MARCH 11, 2016

I will say that surgery was rough. Craniotomies are the tough. When I woke up, I was just grateful to have survived. I was trying to be tough during that whole week being stuck in the hospital, but honestly I was really struggling deep inside. I didnt ever think about what it would feel like to have your face peeled off, and your skull sawed into....I didnt anticipate not being able to recognize myself. I would honestly look in the mirror, and just cry. It shook me to my core, but I learned a long time ago that it is much easier to be positive, than it is to be negative. I also am grateful that so many people were watching, and emailing me saying my story helped them, because it gave me the drive I needed to "Just Keep Swimming" 

During all of this, and still to this day as I write this update, the HARDEST thing of all has been missing my sons. It has been not being right next to them, not seeing them, and having them worry about me. I would take any pain over that emotional pain, and seeing worry in their little eyes. I had them stop by the hospital, and it was good and bad. As I look at the picture below; I am saddened by the sadness I see in my oldest son. It was good because it again gave me strength to keep going... 

Hospital visit 6 days after craniotomy! 

I was in the hospital in Salt Lake for one week, and then I got to go home. Honestly I knew instantly that something was off, I still tasted fluid, only this time it was more intense. I couldn't smell ANYTHING, and couldn't taste any food, but I could distinctly taste fluid. I was only home one day when I called Dr Macdonald to tell him. He wanted me to wait a few days, to see if we could get the leak to stop...and instead of stopping, it got worse. Anytime I would exert myself, it would drip. They gave me until Monday morning, and if it hadn't stopped, I would need to go back down to Intermountain Medical Center. I got on Facebook, and begged for people to fast, and pray. I honestly believe in miracles, and felt like I deserved one...turns out it wasn't part of my path, and so I returned to Salt Lake that Monday to be re-admitted to IMC! 

When I got there, they got me all set up, put another lumbar drain in, where they drained my CSF so they could see where I was leaking. Turns out that I was actually leaking through the exact same spot they had just fixed. I had somehow blown a hole through the repair, and had air pockets in my brain. I was expecting to be in the CT, and MRI scanner for hours. 10 minutes after the first test, they rushed me back to my room, and Dr. Macdonald came to tell me the news. It meant that I needed another craniotomy to fix. I was devastated but I knew I was out of options. The next morning as they wheeled me down to surgery something felt off...and the Doctor was in such a hurry. As they put me under he was yelling at everyone to make sure they hurried too. When I woke up, the leaking seemed slower, and I went home in 7 days with out any more incident. 

Although three weeks later, out of the blue, after all of the swelling had gone down, I started to notice some swelling above my eyebrow. The next day it got a little bit worse, and then it kept getting worse until my eye was completely swollen shut. I called the doctor, and he was out of town, so his assistant dismissed it as csf, and then told me I would be fine. So I waited another day, feeling like crap, and called again, the swelling kept getting worse, my fever was getting higher and higher, and so I finally went into to ER in Pocatello. The Doctors there called my Dr, and his assistant said? Its csf, leave it be! They didnt do any tests because of this one particular nurse...the problem with that is that csf didnt have any access to my forehead. It couldn't have been causing the swelling. Finally they told me to casually come back to SLC. They admitted me to the hospital, and the second the doctor saw me, he hurried and grabbed a needle, and said that swelling is infection. I lost it! What?!? 

Right - Swelling Day Before Admission -- Left - 6 Weeks later

Everyone left me, because they had to go back to work, and I was all alone, getting a tremendous amount of antibiotics. The next morning they out of the blue come into my room to take me to surgery. I was shocked, and totally unprepared. Nobody was near me, no family, no friends, it was just me, and I was going to go down to have a life threatening surgery performed to remove the infection. I can say this with absolute clarity, and positivity...I have never been more scared, and never felt more alone. I couldn't breathe, and I did everything I could to get out of it. Three nurses were there, waiting for me, and I begged them not to take me. While they were there I scrambled and was texting my best friend. He messaged be back, calmed me down, and then they took my phone, put it in a closet, and off we went. I literally bawled my eyes out the whole way from the 14th floor to the 2nd surgical floor...something different happened this time though. Instead of being on an inside operating room, with no sun light, we rounded the corner, and the Salt Lake Mountains were beaming with the amazing sun shining through the floor to ceiling windows. Right at that moment the warmth from the Sun was a sign to me. I was going to be ok, and I could do this. At that moment I repeated to myself "I can do hard things..." and took a deep breath, and entered that operating room with faith, and positivity. That surgery actually went really well, considering what it could have been. They were able to save the bone(at least for a little while) and I was alive! I didn't have to go to the ICU either!  The infection was so bad that they removed TWO solo cups full of infection. It was actually sitting on my csf sack on the brain, and had it penetrated through that, I would have almost certainly died. 

Blessed? In more ways than one, and in this experience its is hard not to see, and feel the blessings, that come from my maker. He knows me, and all of the pain, sadness, sorrow, and frustrations are for a reason, even if I don't completely understand. That was my THIRD craniotomy. A few hours after I got out of surgery, they had me on round the clock antibiotics, and an infectious disease doctor came up to my room. He had to know why I didnt have the shunt put in weeks prior?! I told him that after Dr. Macdonald wanted to do it, I just didnt feel right about it, and felt strongly enough about not doing it that I made up an excuse that I just needed a few weeks off medications. The doctor said to me he as astonished, and believed had I gotten the shunt a few weeks prior, I would have died long before I had been treated at the hospital. Again; I have been very very blessed. I know that there is a higher power keeping me safe. 

After the swelling came down, my #holeintheskull 

Since then, I have had three rounds of 6 week long antibiotic treatments. I did have a 4th craniotomy to remove my skull flap, and have been looking rather weird to say the least with a missing hole on my head. I have fought off a blood clot, and had two surgeries to remove a kidney stone. I have pushed harder than I have ever had to push before, and I know that I have come to this point as a stronger, better version of myself. I am now going to counseling, and opening up not only about this trial, but my whole life, and recognizing areas where I need improvement. I have put up boundaries with people, especially some of my family that have needed them, even though that hurts me so badly, I know it must be that way, so I hope for things to be better in the future. I have even in the last few days realized hard lessons about my current situation that need to change, and I am pushing myself to be brave enough to deal with them. I am now just 5 days away from my 5th craniotomy to place a prosthetic piece to protect my skull, and that will be a huge relief off my plate. 

I am what I choose to be. I am a good person, who's had my share of trials, but I am proud of the way I have handled most of them, and know we are making a change with the Bee Happy Movement! I get emails from people nearly everyday expressing how my openness has helped them, and so I keep doing what I feel is right! 

Tomorrow is a new day, and a new chance to make all my dreams come true, and to be the Father, and friend I have always wanted to be... 

I STILL want to MEET Ellen...

We CAN do HARD things....

Dusty