God's timing

My oldest brother Randy has been in the ICU for over 3 weeks.

The last I had written here on my blog was that his kidneys seemed to be shutting down.

When we got the news that Randy might have to go on dialysis and that would probably mean that Randy's time here on Earth would be coming to an end, I dropped to my knees and started pleading with Heavenly Father to make Randy well enough to stay with us. 

I have to say, I dont know what I would do without my Heavenly Father. I truly believe that He hears our prayers. He listens, He cares. 

Others who love us and Randy started praying for him. Clients of mine that I am friends with now, were sending me their love and prayers for him. We had a cousin who immediately said his family would fast and pray for Randy. 

My brothers and I loaded up and went to the hospital to spend some time as our original family of 6 there in ICU. The boys gave Randy a Priesthood blessing. It was nice to be there all together, even though it was in a tiny, cramped ICU room in very scary and unfortunate circumstances.

Randy's kidneys started working better the next day and he did not have to go on dialysis.

Then Randy went through a roller coaster of health issues. One day his breathing was a bit better and they lowered his oxygen down and were talking about taking out his breathing tube. The next day they cranked his oxygen back up since he was having trouble breathing and then he spiked a 104 degree fever! This poor guy.

Sidenote: my mom (mostly) has spent all day and night, EVERY DAY AND NIGHT at the hospital on a horrible little chair that you sit up in. She has been amazing.

Well, since Randy's breathing was still so bad, they decided that they needed to do a tracheotomy. :( That is a forever decision, however, it might help us in the future with problems such as colds or pneumonia. So he had the surgery. With that comes a whole new set of obstacles. He has always been total care, but this is so much more involved. If Randy got well enough to leave ICU he was going to need to be transferred to a rehab facility where my parents would learn how to take care of him and his trach. My mother went to tour one, one day. Not only do they not cater to total care special needs individuals, they dont have physicians oversee them everyday, and they dont allow anyone to spend the night. That obviously wouldnt work for us. 

There was a program there in the hospital that Randy is currently in. And it seems to be the best solution. Randy's doctors would come in everyday and monitor his care. He would be right there in the hospital if something were to happen or go wrong. And one of our family can be in the room with him. But the insurance required 21 days in the hospital and on a ventilator before he could qualify. Well, wouldnt you know, Randy just so happened to be on a ventilator and in ICU for 3 weeks and a couple days. He now qualified.

God's timing you guys. What if, all of this, went on just long enough to get Randy into the correct program to help him have the best care? 

Well, I dont question 'what if'...because I KNOW that Heavenly Father is looking out for Randy.

As of yesterday, Randy has been moved to that facility there in the hospital. He is out of ICU!! He is still on the ventilator, and I have no idea how long he will be in there before he can come home, but they have taken the next step!! Hopefully soon, we can get him and my mom home for good and settle into our new 'normal'. 

We sure miss him.

Thank you everyone who has reached out, expressed love and concern, and especially offering up prayers on our behalf. We have felt them. 

Drowning

Not many people know this about me, but one of my most absolute fears is drowning.

Its always been weird to me, since i grew up in the water. I've always been a strong swimmer and so comfortable there. I used to pretend i was a mermaid since my mom always called me her fish.

But ever since I can remember, some of my worst dreams have revolved around me being in a lake or ocean and drowning. 

As an adult I've tried to analyze this a little, what this means for me. 

Honestly I think I fear "drowning" in the whole sense of the word. 

Have you ever felt like work kept piling up around you and you were "drowning in work"?

Have you ever felt like you over-scheduled your vacation and you were so busy running around that you forgot to enjoy the vacation?

Have you ever just been so consumed with what was going on in your life and the unknown of WHAT MIGHT HAPPEN that you felt like you were just "surviving"??

I call this drowning in my own head.

I feel like I'm in that lake or ocean, paddling along and the water keeps getting higher. The current starts pulling at me more, and I am getting exhausted.

I have overloaded myself a bit when it came to scheduling out my work schedule. I have spent so many hours talking back and forth with perspective clients, running out to photo shoots, coming home and editing...that thinking about it hurts my head. Plus, i've been putting that first lately, instead of my son. I'm not okay with that. My starting this business was to help earn an income for my family as well as to use it as a creative outlet since its a joy and passion of mine. It was never supposed to be full time or take me away so much from my child. I think I need to reevaluate things.

My brother went from being admitted to the hospital with pneumonia, to moved to ICU for a week, to being intubated twice to help him breathe, to his kidneys stopping working to where they are now discussing putting him on dialysis. If Randy goes on dialysis and it doesnt work...then they are basically saying we need to prepare for the worst. 

My mom and dad need to make some hard decisions.

I am quite literally having to think about my big brother dying. 

That has always been a reality for us, with his special needs...but we never have dwelt on it long. The thought of him not being around wasn't okay with us, we refused to think that way if we could have him longer. 

Yesterday was such a hard day. 

This morning it seems his urine output is doing better and his blood pressure is up a little since they are weaning him off his sedation. If this continues, then as far as dialysis--it wont be necessary. However, since they intubated him again, more than likely they will put a trake in, and he will have that for the rest of his life. 

But see, even thinking like that is getting ahead of myself. We aren't allowed to think more than one day at a time, because everything could change quickly. 

Life is crazy. 

And I'm talking about feeling like I'm drowning in my head. 

...Maybe I'M crazy.  

Life lately

Well...the life of boring/weird continues.

I started having horrible migraines and feeling super nauseous so I went to my doctor. Turns out I had a horrible sinus infection. Apparently I've had multiple sinus infections right after another and my doctor is concerned that my deep sinuses are not draining properly. I have been on antibiotics and about a thousand other medications and it hasn't stopped my symptoms. Lucky me...I now get to go in and have a CT SCAN and get to follow up with a neurologist. Because I'm cool like that. :/ I've also developed another infection thanks to the antibiotics. Good times.


Nash got sick 1 day after me. He had a horrible time breathing, runny nose, and was complaining about his throat. He had strep over Labor day so I was getting worried. We took him in and...guess what?! Sinus infection. Come on!! He is the worst sleeper when he is sick and I've been up with him like 3 times a night for the past week. The antibiotic is definitely working though, his head has been clearing out. Hes gone through like a box of Kleenex.


Jace has been having a rough go at work lately. I'm sure everyone has heard of the drama with Wells Fargo. If not, let me sum up super quickly. A bunch of employees over the years made accounts for people without their permission because Wells Fargo had such high expectations that the employees (in most cases anyways) felt they had to do that to keep up. Well, crap hit the fan. Thousands of employees were fired. There was a 184 million dollar lawsuit. The CEO has been called before Congress (he got ripped apart). And now they are having to change LITERALLY EVERYTHING. Jace is having a tough time knowing what his job is now...he is in charge of retail banking at his branch...and they arent doing retail anymore. And since this is all happening on the fly there has been no direction from the higher ups yet. Its been tough.


My brother randy woke up yesterday having trouble breathing and his nailbeds were blue. My mom and dad took him to the ER and he was admitted with pneumonia. Poor guy. Last time he had pneumonia he was in the hospital for a week.



and thats us right now!

blah. On the plus side...i bought a ton of winter clothes for nash and they should be here next week! he is now the same size as his older cousins...so we wont be getting too many hand me downs anymore. I also bought our Christmas ornaments...because i spent alot of time at the doctors and they are next to Hobby Lobby. Sue me!

Nash's new favorite show on Netflix is Mickey's House of Villians, he is 100% using a booster like a big kid, he would rather skip breakfast and then eat a huge lunch, and he is super allergic to mosquitoes just like me--which makes sense since we are the same blood type and life is cruel. Ha! This weather has been awful, everytime we step outside we are both swarmed!

My Birthday/Fathers Day!

June 15th 2014.

Father's Day. Also, my 27th birthday.

Last year, these occasions were pretty much ruined. The day before my birthday and 2 days before Fathers day we found out that our 5th IUI procedure had failed and we were not pregnant. It was a devastating weekend. In fact...we were trying to remember my birthday last year and we couldn't. It was so bad we literally had tried to forget it.

This year, both occasions were on the same day...and we were much much happier!

This year, we sat in church with our little Nash on our laps. It was good.

Jace bought me my fancy camera for Mother's day/my birthday...I added to it a camera case so I can take it places. Happy Birthday to me! My family was cute and made some signs (my mom to be exact!), and they gave me $ toward getting a tripod and remote for my camera, plus some new garments and a new apron for the temple. Simple and totally exciting to me.

Jeff and Melanie gave me a super adorable post with a welcome sign to go out by my front door. LOVE IT.

Jeff and Mindy were so sweet and gave us a date night!

And my in laws gave me a cute counter sized chalkboard/whiteboard. So fun!

Randy

 

 This is my brother Randy.

Randy is about the most special person I know.

He is the oldest out of us 4 kids.

And he was a normal, energetic, blonde 4 year old boy, who loved his baby brother Jeff, sesame street, super grover, and zebras.

Then he got sick.

He got a high fever and started having seizures.

To stop the seizures at the hospital, they put him in a drug induced coma.

By the time they brought him out of the coma, Randy was changed.

 

They aren't sure if it was the fever, the seizures, or the coma, but Randy went from a spunky little kid, to one with major disabilities. He could no longer talk. He could no longer go to the bathroom by himself and had to wear diapers. He had trouble eating so they placed a tube into his stomach.

And he still had seizures EVERY. DAY.

 

Fast forward to today. Randy is 35. He has been dealing with all of this everyday for the last 31 years. So have my parents.

My brothers and I grew up, not knowing Randy any differently, but loving him just the same.

Randy is our hero.

A truly selfless, caring, loving, humble, celestial being.

And we wish we were a little more like him.

Randy has taught us so many things, like Patience. Humility. Service. Love. Compassion. Strength.

 

Today, Randy went in to have brain surgery.

He has many different types of seizures every day still.

The doctors think that this operation will be the one to stop the most dangerous of the seizures. Those are his "drop" seizures. The ones that have made it so Randy cant walk anymore. Because if he stands up and then has a seizure it takes him down to the ground and has been responsible for breaking many of his brittle bones.

The surgery they are doing scares me. They are splitting the hemispheres of his brain hoping that that stops his drop seizures.

This could go one of 3 ways.

Either he stays the same and we put him through a horrible surgery for nothing.

He could get worse. The surgery wouldn't have worked and made it so he had less freedom and makes life harder for him and my parents.

Or he could get better. He could stop having the horribly unpredictable and dangerous seizures, and gain mobility back in his legs, and be able to give him more freedom.

 

We are hoping and praying for the best.

I sure love that brother of mine.