Sixes...Part One

Today's the day...six years ago since our son was in a terrible, near fatal car accident.
Today...I'm just gonna ramble about some memories that have been rattling around in my head the last couple of days. Sort of a "stream of consciousness" kind of post. Might be long, feel free to skip it if it's not your thing.  There are a lot of memories,  so I'll just pick out the stand-outs.

(Well, so much for pulling out a few memories to share. I started writing and it just kept coming. I'm not editing, just posting it as is~ that's the type of post it's meant to be, I suppose. Read it if ya like. I decided to break it down into a couple of posts because this is getting quite long and I don't have any more time to spend on it today. So, more to come)

Here we go!
When I got the phone call from Rick~ I remember where I was, what I was doing. I remember calling my mom & dad and asking them to go to the hospital (we were in Arizona, Curtis was in Utah). I was on the phone with my mom at the same time the police were at the door with my dad. (Really? That's as far as I could get with the writing before I got choked up with emotion? This is a story I've told, remembered, lived so many times...strange when those emotions come flooding back).

That first night: Calling my friend Jeniel, talking with the neurosurgeon on the phone, praying with my children, crying. Not being able to be there, relying on our family (my parents, my 2 brothers, Rick's parents, Amy & Gary) to be there for us. Their constant vigil in the ICU. Trying to figure out how to get to Utah in the shortest time possible. We were going to drive, but the hospital begged our family to try and find another way, driving is too risky when you are in shock. We ended up flying to Utah the next morning, flight arranged and paid for by Gary & Amy.
Trying to get everyone packed and ready to fly to Utah very early the next morning. Praying for, and receiving help to find all the things I wanted to take with me; pictures, Curtis' favorite blanket, a stuffed doll from his childhood (Curtis slept with his Cabbage Patch doll, Buddy, until he was 12!)

My dad and brother meeting us at the airport. It was kind of emotional. The very, very long drive from Salt Lake to Provo. Probably the longest drive of my life.
Our family and friends & some of Curtis' friends gathered in the ICU waiting room.
The long, slow walk down the hall to see Curtis for the first time. You know those horror movies with the hallway that keeps getting longer and longer...that's what it felt like.
Seeing Curtis for the first time. Wow. No words can describe. I didn't cry. To be honest, he was unrecognizable. The only thing we recognized were his very ugly feet! :) The first thing I said, as I stood in shock at his bedside: "Oh Curtis, what have you done?" (There comes those pesky emotions again).

Hours and hours and hours spent by his bedside. While family kept a supportive vigil in the waiting room. Making friends with some other families that also had loved ones in the MICU (Medical ICU.

Wonderful, amazing doctors and nurses who have a very special place in my heart. I really believe we were blessed with the best of the best.
Visits, care packages, food, money from caring, loving friends & family.
The first time Curtis opened his eyes. I had just walked in to his room. I was alone...and kind of freaked out a bit! He wasn't awake, but had his eyes open a little. I thought something was wrong. Or at least more wrong than things already were! Thank goodness for our nurse, Barb. I hurried out to find her. Nothing was wrong, just the process of waking up from a coma.

One of the nurses telling me that Curtis always calmed down when I was there. His blood pressure, heart rate and ICP (intracranial pressure) would always go down when I was there. This meant a lot to me.
Learning a whole new lingo. Glasgow Coma Scale (his was a 3, the lowest possible score), Vena Cava filter, restraints, ICP, PEG tube (feeding tube), ventilator, vegetative state. Many of these words I already knew, experiencing them first hand was a whole 'nother thing.
Emily seeing Curtis for the first time. It was really hard for her. He was pretty banged up.

After 2 weeks, we realized this was gonna be a long haul, so we flew with the other kids back to Arizona so they could get back in school. They had been in school 10 days before we pulled them out to go to Utah. I don't know how my kids passed school that year. It was a rough, rough year.
Leaving Curtis behind @ the hospital, being cared for by the doctors and nurses, and being watched over by our family. Hard, hard, hard! Our kids being allowed in the MICU to stay good-bye to Curtis before we left. At this point, still not sure he's gonna make it. Not sure he'll stay alive until Rick & I can get back the kids settled in AZ & then fly back to Utah.
Crying in the airport terminal as we waited for our flight. I have absolutely no words to describe the devastation I felt at having to leave Curtis at this point. Funny memory from that day (well, funny that I remember it, the incident wasn't funny) Steve Irwin, the Crocodile Hunter was killed that same day & it was all the big news of the day that everyone was talking about.

The flight to Arizona~ I sat with the boys and Rick & Emily were in the row behind us. The lady sitting next to Rick struck up a conversation about why we were traveling. As Rick briefly told her our story, she expressed her condolences and then asked some questions, she was very nice, but I remember feeling like I wanted to just turn around and scream at her to shut up! (I didn't do it!)
Later, as we waited at the baggage claim, this same lady found us and asked for our son's name so that she and her family could pray for him. We had this same type of kindness repeated over and over and over. Not only by family and friends, but by total strangers.

Some very sacred, spiritual experiences. Too sacred for me to blog about.

Meeting one of my former Young Women when we toured the rehab facility at the hospital. She was there with her mom. I completely fell apart that day. (Thanks Janice, for letting me cry on your shoulder!) Probably one of my worst days during that initial hospital stay.

Staying at the Guest House at the hospital. Rick flying to UT on Friday night or Saturday morning, and flying back to AZ early Monday morning. Having to transfer to the Hampton Inn the last 2 or so weeks. They were incredibly kind to me.
My mom and dad spent every day with us for the whole entire 2 months we were at UVRMC (except for a couple of days when my dad got sick). My dad was never afraid to help with Curtis. He would feed him, hold his pee bottle for him, and push him in his wheelchair through the halls of the rehab. I relied on their support a lot. Rick's parents were also awesome. Rick's mom flew to AZ and lived there & took care of the kids so I could stay in Utah with Curtis and so Rick could work & then be free to fly back and forth on the weekends. Never could have done it without the help of both our families.

Inpatient Rehab. Hated it at first. It was a hard transition. But once we got the kinks worked out~ I loved it there and the nurses, therapists and PCT's (patient care techs) became my family.
Long rehab days. I would get there about 8 AM and leave about 10 PM.
Walking across the street every morning. And back to the Guest House every night, feeling very much alone.

One day, our nurse Fanice came in and asked if I had had any lunch yet. I replied no, and she encouraged me to go take a break; "I'll watch over your boy while you're gone." What a kind, sweet thing for her to say to me.
More new terminology: Rancho Coma Scale, neuropsychology, left side neglect, adaptive strategies, post traumatic amnesia, the GOAT, severe traumatic brain injury.

The medical staff were always so amazed at how big Curtis was. He is a big kid. He was too tall for the beds, his feet always hung over the end of the bed.  Everyone also thought him to be much older than 19.

Helping Curtis shower for the first time. I'm sure it was a scary experience for him too! He was still not fully awake yet. I had to convince the PCT that it would take more than the two of us to help him, and I was right! There ended up being 4 of us and I think we were all drenched by the time we were through.

Pureed food, doctoring up pureed fish with sour cream so Curtis would eat it. Curtis always wanting more milk. Curtis being very adept at eating the Jell-O and spitting out the fruit that was in the Jell-O. He also really liked chocolate pudding and did I mention milk?

Curtis having to learn to eat, walk and talk all over again.  Rick spending a Sunday afternoon helping Curtis find his voice. He was talking a bit at this point, but always in a whispery voice. So Rick helped him figure out how to make the sound come out louder.

Curtis spilling soda and ice cream in the same spot in the hall outside the gym. I think they've since replaced the carpet in that hall with hard flooring. Good choice!

Eating at the hospital Snack Shack. Developing an "addiction" to Dr. Pepper (someone was always bringing me a DP!)

Late night conversations with some of the PCT's.
Waffles
Thumb Wars
"Mr. Brody" (aka Gary Coleman, yes the celebrity)

Curtis wanting to go all over the hospital looking for "that tiger movie" to rent.
Being recognized all through out the hospital because of our daily rehab walks with Curtis.

Funny, sometimes strange and bizarre conversations with Curtis. I've said if before~brain injury recovery is like living in a real-life hallucination! One funny conversation we remember was with Emily. They were talking on the phone. He told her he was a "B". We are all worried about what was gonna come next, but no, he literally meant a bee, a fat, orange and black bee.

Another time, some wonderful friends in AZ had paid for Emily to fly to Utah for the weekend. That Sunday, we were in his room, Curtis was in his wheelchair, he had to be strapped in (restrained) and he was trying everything he could think of to get Emily to unstrap him so he could get up and get out of there! It was quite a funny conversation that we captured on video.

The first time that Curtis actively participated in Speech Therapy (even if it was brief). He read through a stack of flash cards, out loud! It was awesome!

The first time Curtis could answer the GOAT correctly after his therapy session. Or at least mostly correct. Even if he had forgotten by the next session.

Curtis did not make much progress in rehab. It was a discouraging few weeks. Once he had his second surgery, he started doing much better and the next thing I knew, we were being discharged.

Having to help hold Curtis down while the nurse took the staples out of his head (from his last surgery). He was furious with me! "You held me down while she hurt me! How could you do that to me!?!" It was not always fun being the mom/nurse/caregiver/therapist.

Our final staff meeting. Saying good-bye to the doctors and therapists we had grown to appreciate, admire and love. Not-so encouraging words from the physiatrist (rehab doctor), statistics, data, prognosis is bleak, blah, blah, blah. Followed up by kind and encouraging words from the neuropsychologist. Thank goodness!

My friend Connie coming to see me just a day or two before we left to take Curtis home. Curtis was in full-fledged Rancho IV at this time and I wasn't dealing with is so well. Connie was kind, patient and even made me laugh! She knew some of the staff there, and let's just say the psychologist was very earnest in her attempts to help.

The absolute fear Rick and I felt when we walked out of the rehab unit for the last time, Curtis in tow. He was at a Rancho Score of 4. Not a really good place on the scale to be. He was very, very inappropriate and combative. Saying we were scared to death is a gross understatement.

The drive home. It was horrible! Curtis was sick and confused. He thought we still lived in Spanish Fork & couldn't figure out what was taking us so damn long to get home (his words). He wouldn't keep his seat belt on, and he wanted to stop about every 1/2 an hour. He was exhausted and it was a difficult 10 hour drive home. Stopping at a park near a Wendy's and letting him sleep on the ground on a blanket. Hiking across the parking lot to buy him a chug of milk when we stopped at Pizza Hut in Flagstaff for dinner.
We got home late, but all in one piece. The next morning, Rick went to work, and my role as full time caregiver to a severely disabled son kicked in to high gear.

 I remember the next morning, just feeling like "Now What?" What the heck was I supposed to do?

...More to come~


You can also read previous (shorter!) posts here: Curtis

Addition

One boy,

One girl,

Two hearts beating wildly,

To put it mildly,

It was love at first sight.

He smiled,

She smiled,

And they knew right away,

This was the day they'd been waiting for all their lives.

For a moment the whole world revolved

Around one boy and one girl.

Curtis and Shae are engaged!

Fajita Nachos

When we lived in Arizona, we loved to get Fajita Nachos at Abuelo's Restaurant.  YUMMY!!!

They are pretty easy to recreate at home.

Tostada Shells

Cooked, Shredded meat (beef, chicken or pork)

Diced Onion

Diced Green Chilies

Shredded Cheese

Sour Cream

Optional Toppings: Sliced Jalapenos, Guacamole, Olives, Pica de Gallo

Coat baking sheet with cooking spray.  Arrange tostada shells on baking sheet and top with meat, onions, green chilies and shredded cheese.

Bake @350 degrees for 10 minutes or until cheese is melted and toppings are heated through.

Serve topped with sour cream and other toppings of your choice. 

My notes: These are really, really good made with leftover Kalua Pork. 

Or with this Pulled Pork.  (My family didn't care for the pulled pork, but it was indescribably good on the nachos!)

These are super easy to throw together if you have leftover meat from another meal. 

We had a little Kalua Pork left over from a recent family event.  Curtis received the

 Melchizedek Priesthood. 

It was a great day!!!

Full Circle

Recently, Curtis and I had the opportunity to go back to the hospital where he was taken after his car accident 3 years ago.

It was our first time back. I was excited...and nervous. I wasn't sure how it would be for me, and I didn't want to be crying the whole time!
It was emotional, but in a good way. It was so wonderful for me to see some of the wonderful people that took care of us those first 2 months. I think it was good for them too~ so often, they never get to see former patients, and the outcome of all their hardwork.

I was so nervous & didn't want to impose on everyone, so I only got one picture this time! Next time I'll make sure I get more.
This is Curtis and me with one of our favorite MICU nurses, Barb. Let me tell you, this woman is awesome and I love her to death! She was so good to us. She and I have kept in touch and I send her photos and updates about Curtis on a regular basis.
Curtis does not remember anything from his hospital stay. It was a little weird for him to have all these people that knew him, but he didn't know any of them! But boy, they were all so happy to see him.

This is kind of a silly picture. When we visited the MICU, Barb was with a patient so we had to wait a bit to see her. But, several people recognized Curtis (even though they didn't all know him) because Barb posts the pictures and updates I send on the bulletin board for everyone to read. It was funny to have people say, "I know you, your Curtis & you had a pebble in your lung." While he was in MICU, he had a pebble that he had aspirated into his lungs and it had to be sucked out. This is picture of that pebble. I guess having an object in your lung is not all that common of an occurence. I try not to think too much about how it got there. (I know how it got there, just don't like to think about it!) I also learned, that he was one of the first patients that they had used the procedure of storing the pieces of his skull in an incision in his abdomen on. So, he's a bit of a celebrity, ha ha!

Here's a picture of some of the strange memorablia I kept from his hospital stay: (Ignore the bottle of lotion, it doesn't belong in the picture).

Weird, the things you hang on to! Some stuff just ended up coming home with us, but some of it was specifically for "memorablia". :) The Vena Cava filter was in his artery, to prevent blod clots. It's a weird looking little device, not at all what I pictured. And the notes I took are scribbled on the back of an envelope, because it was the only thing I could think to grab to take notes on. And even though I said to ignore the bottle of lotion...it did remind me of a funny story. When Curtis was in the rehab unit, for some reason he liked his feet rubbed. Anytime someone would walk in the room, he would stick his feet out. Everyone would rub his feet for him~family, nurses...everyone thought it was funny. We went through about 3 big bottles of lotion on his feet!

I also took Curtis on a tour of the hospital, and shared some memories and funny stories with him. It was just a wonderful day for me! There are still several people we would like to see, and that Curtis would like to meet so he can remember them. We'll go back again in a few months and I will for sure take pictures next time.

Hallmark Doesn't Make a Card for This!

Today is the 3 year anniversary of Curtis' car accident.

(This Post contains some pictures detailing that event, which may be unsettling or disturbing to some).

What do you say for something like that?
Happy Anniversary of Your Traumatic Event?
Congratulations on Surviving the Crash?
Good Luck With That TBI?
Nothing seems fitting, know what I mean?

Some people call it a "Re-Birth Day". We just call it the Anniversary. It's one of those dates we'll never forget, no matter what we call it.

Here are some pictures of the car before the crash. Sorry they are so small!






And here are the "after the crash" pics...

He was in a partial head-on collision. He was doing about 80 mph (yes, the accident was his fault). He hit the other car, flipped up over the top, then rolled 5-6 times down the street. He was not wearing a seat belt and was ejected from the vehicle. We think the initial damage to his noggin occurred when his car piggybacked on top of the other car before rolling down the street. The sunroof caved in with the force of the impact, clipping him on the right side of his head, breaking his skull in 3 pieces and shattering his right temporal lobe.

He hit his head again, on the left side, when he was ejected from the car...he then slid along the pavement and came to a stop, lying in the road, face down and alone. This is probably the most disturbing image we have (luckily, no photos!).

When the emergency responders arrived, he was not breathing, but had a faint pulse. One of his pupils had "blown" (that basically means it was non-reactive...) a sure sign of head trauma. He had a faint pulse...the EMT crew "bagged" him (artificial respiration, not a body bag :) and rushed him to UVRMC.

(The other driver received only minor injuries, thank goodness, and is fine)

A Neurosurgeon, whom Curtis would soon be in desperate need of, was just leaving the hospital when the call came in that a head trauma was en route. He stayed, and saved our son's life.

Meanwhile, we are in Arizona, totally unaware of the events that were unfolding.


This is a picture of Curtis taken a week or two before his accident.

Curtis was stabilized in the ER/Trauma and given a blessing by his Uncle Gary and the Trauma Surgeon.

By this time, we have been notified, have called the rest of our family and are anxiously awaiting word from the hospital as to what to expect.

So much happened, in such a short time period...and I honestly thought I could write it all, but I am getting a little too emotional, so I'm just hitting the highlights.

Curtis needed emergency surgery to save his life. He had to have a craniotomy, where they remove a piece of the skull to allow room for the brain to swell. Additionally, he had his right temporal lobe removed as it was extremely damaged. He was then taken to MICU where the waiting game began...would he live? Or would he die? No one knew...

We arrived at the hospital the next morning, about 16 hours later. Gary & Amy arranged and paid for our family to fly from Arizona to Utah...It was the longest night of my life!

When we entered the ICU Room,
this is what we saw:

He was on a ventilator, and was hooked up to numerous other tubes and lines and monitors. He had tubes in his lungs, and an ICP line in his head (intracranial pressure monitor). A few days later, he had a PEG tube placed in his stomach (feeding tube). He was battered, bruised and very, very sick. He was covered with lacerations, bruises, road rash etc.

He was in the MICU in a coma for 3 weeks.

When we first saw Curtis, the only thing that we could recognize was his feet! He has really ugly feet, and that's the only way we knew it was really him!

He had to be restrained at all times, so the blue bands on his ankles are leg restraints. I think he broke 3 or 4 of these! I'm sure he'll be thrilled to know I've posted a picture with his sexy catheter tube showing! :)

This is a picture after he was taken off the ventilator. He is wearing a CPAP mask to help him breathe on his own. This is also during a physical therapy session (In the ICU, while still in a coma!) They move the bed into a sitting position and see how he responds. He grabbed the side of the bed and tried to right himself...which was awesome. At this point, he is also opening his eyes, but is not responding to commands.

This is a picture from the first day in Rehab. He was in the inpatient rehab at UVRMC for a little over a month. He is seen here wearing an attractive blue helmet to protect his head, which is still missing that skull piece. He also sports a plaid restraining jacket, and a brace on his just recently fixed broken nose! If you could actually see his eyes...you would recognized the "the lights are on, but no one is home" stare that is common with head trauma!

Sorry for the red eyes in this picture. They are from my camera, not from the accident! You can kind of see how the right side of his head caves in a bit, rather than being rounded. This is after the swelling in his brain has started to reduce, but the skull has not yet been replaced. The 3 puzzle pieces of his head have been stored in his abdomen, just under the skin and fatty layer. They will stay there, alive and well until the Dr. is ready to replace them.

These are some pictures after the surgery to replace the skull flap. He had some minor complications at this point (before the surgery) but everything went fine and he recovered well. In fact, before the surgery he hadn't started talking yet, and after the CSF (Cerebral Spinal Fluid) was drained, he started talking! It was all weird, hallucination sounding stuff, but at least he was talking!

He ripped the bandages off his head at the first opportunity. He has a very scarred head! We tell him he looks like a baseball!

He was discharged from UVRMC in October 2006 and returned home to Arizona with us, to resume therapy there. He spent a little over 9 months in outpatient rehab at St. Joseph's Hospital in Phoenix. And another 16 months in a comprehensive Neuro-rehabilitiation program, also part of St. Joe's Barrow Neurological Institute.

I wish I had the words to explain what it is like learning to live with TBI, for Curtis and for us.

He is doing really, really well...but he will always be disabled. He doesn't have many physical disabilities, but rather has cognitive disabilities (memory, reasoning, judgement, impulsivity, etc.) He isn't able to drive, because of his vision issues, and that is probably his biggest disability. But he is doing amazingly well, and for that we are grateful.

I wanted to write more, include more detail, and overall be more eloquent, engaging, interesting...but once I got started I found it much more difficult than I thought it would be...so I apologize for the harried, somewhat choppy tone...I have left so much out...but wow, it would be pages and pages and pages long!

I do want to express thanks for all the help and love and support along the way.

Firstly, to our family. Both my family and Rick's family were and have been incredibly helpful and supportive.

Our Friends, from work, from former wards, we appreciate the outpouring of love and support.

Our church family, 5th Ward here in Utah~ really took care of us and stepped right in to love and nurture us just as if we were still ward members there! Most of the woman I admire most in the world and count as my dearest friends live or have lived in this ward!

And McQueen Ward in Arizona...they fed us, prayed for us, helped me shuttle kids and did everything they could to help us once we returned to AZ

URVMC in Utah...I thank Heavenly Father every day for the dedicated, talented team of doctors, nurses and therapists that worked with Curtis. They gave us a firm foundation and stable footing on which to build. I think they are the best in the world!

St. Joseph's Hospital...Again, wonderful team of doctors and therapists that have helped Curtis and our family along the road of recovery. They were a perfect match to our beginning at UVRMC. We are so thankful that we lived in Arizona and could take advantage of the wonderful rehab opportunities there.

VR Counselors, who funded much of Curtis' rehab.

TBI Support Community...I have met some truly remarkable people throughout my association with the brain injury community. I have made some dear friends through the 2 support groups I attended.

My Heavenly Father...for all the countless blessings and tender mercies, all came from Him.

And to Curtis...for always keeping positive, for pushing forward, for always fighting and working for more!

Here are some pictures I took today:

He has been going to school, and has 30 college credits and is waiting to start classes again next week. He has volunteered 100+ hours, working in both inpatient and outpatient PT at St. Joe's. He's currently looking for a part time job.

When he was discharged from his last therapy program, his Neuropsychologist said that she has never seen anyone with such a severe injury make such a remarkable recovery. She's been working with brain injury patients for a long time, and is not one that says something unless she really means it. He really is lucky and blessed!

There is so much more to the story...but this will have to do for now!

Quite a handsome, young man!

CAKE DAY!

Cake: (kāk) Noun 1. a sweet baked food made from a dough or thick batter usually containing flour and sugar and often shortening, eggs, and a raising agent (as baking powder).

Day: (dā) Noun 1. the interval of light between two successive nights; the time between sunrise and sunset.





May 13th was Curtis’ “Cake Day”. Cake Day is a celebration of sorts, and signifies the end of his therapy program at the CTN. And yes, there was an actual cake involved! (German Chocolate, to be exact). He was recognized during “milieu”. Maura, his speech therapist, highlighted his accomplishments, then presented him with a cake and he was applauded and congratulated by the other staff and patients.

CTN is a comprehensive Cognitive Neuro-Rehabilitation program used in the treatment of brain injury. It is the best brain injury therapy program in the country and we feel fortunate to have been accepted into the program. Curtis has been attending therapies there for 16 months. During that time, he has completed his GED and started attending college. As of last Thursday, he has 30 credit hours.

He has spent most of the last 2 ½ years in therapy. He has come such a long way, and we are so grateful for the dedicated, talented, professional Doctors and Therapists who have helped him get to this point. It has been an amazing journey, with many, many people involved in the process…

We started out here, in the ICU in a coma. Battered, bruised and broken, without much hope.

And today, we are here:

"You've come a long way, baby!"

But today I just want to say~ Congratulations son, you’ve made a remarkable recovery!
Enjoy the moment (and the cake!)