Goodbye Kycie; Part 1

How are you doing?  I have been asked that question many times over the past 18 months. I would say that I don’t really have hard days, I only have hard moments.  It is the little things that hit you when you are not expecting them.  I can walk through my room 10 times a day and be just fine, but every once in a while I will stop in the very spot I held Kycie as she took her last breath.  Hard moment.  It seems like when ever I start to feel sorry for myself or am having one of those hard moments I hear Kycie whisper in my ear, “don’t be sad daddy.  I am happy so you should be happy.”

We never intended our story to be as public as it has become.  I write these blog posts for me and me only.  I know people want to know what happened, what we were thinking and why we did the things we did.  I know people want to ask me when they see me around town but don’t dare.  I know that these people prayed hard for Kycie, probably even donated money to my family.  I would like to tell them but I just can’t.  By writing it down they don’t have to ask.  This way I don’t have to retell it over and over. 

The biggest reason I make these posts is because it forces me to write it down.  When we were living in California, a speaker in stake conference gave me an idea.  We had a brand new 2.0 megapixel camera and a computer.  At the end of each week I would use one or two pictures we took during the week and put it on a word document.  I would then write about what happened that week and it was used as a family journal.  That worked out pretty good when we only had two kids, but when we added a 3rd, then a 4th, then a 5th and then a 6th it became obvious that writing weekly about each kid wasn’t going to happen. 

Family Journal Page from 2006

Family Journal Page from 2005

In 2011 I started to make a year-end book using iPhoto.  It started as a Christmas present for Jamie where I would gather photos from each month and write a little about what happened.  That way we could look back at the year and see what we did as a family each month.  In the digital age, we take a lot of pictures and print almost none.  This way we had a printed copy of the year.  Not in great detail like before, but better than nothing.  I did this every year until 2015.  Things got too busy at the end of the year and I never finished the book.  I planned on finishing it when suddenly Kycie got sick.  Now I’m really behind.  I want to make a book for each month Kycie was in the hospital.  We saved all our text messages we sent family and friends each night while in the hospital and I want to include those in the book.  I want to add my personal thoughts and feelings.  I want a book for Kycie’s welcome home, her time at home, her time back at Primary’s and a book with all the wonderful photos we have of her funeral.

Family Year End Journal 2013

Life doesn’t slow down and I can barely find time to type up a blog post.  I will do one more blog post about Kycie and then I will focus on finishing all the family journals.

With Kycie’s story getting so much attention it has had both positive and negative effects.  The other night I was talking with my brother.  Speaking with him helped me realize a personality and behavioral change with Jamie and me.  I don’t know what exactly caused it, probably everything added together.  From the traumatic day of January 30th, to living 310 miles apart while Kycie was in the hospital.  Not to mention the stress of caring for 5 other little boys who understood but could not comprehend what was going on.  Owning a small business 110 miles from home and trying to keep it afloat.  Finally the unexpected passing of Kycie on July, 11th.  Suddenly Kycie was gone and we had to move on with our lives.  Jamie and I pulled back from those we were closest to.  Some of those who played the biggest part in caring for our family while Kycie was in the hospital were left with reading our Instagram posts to find out how we were doing.  We closed up to close friends and family members.  I know we offended some, and for that I am sorry.  I’m not a psychiatrist and I know little about the study of human behavior.  I know that this experience for me has led to certain obsessions that have led to peculiar compulsions.  I have to consciously resist feelings of guilt, anger, resentment and depression.  It takes a lot of energy to focus on the positive and work towards making things better for the next child. 

I avoid contention and drama the best I can but sometimes still find myself knee deep in it.  Someone close to me said, “People ask me how you are doing and I don’t know what to tell them because you never talk to me.”  I told him, “I do not talk to anyone.”  And that is really hard for me because I have a lot to say.  I talk to Jamie because of anyone in the world she will understand me the best. 

One thing I want to make clear is that I do not understand what Jamie went through.  I never will.  I am not a mother.  I am not a mother that lost a child.  I am not the mother of Kycie and therefore I will NEVER understand what Jamie went through or is currently going through.  We can relate to each other in a lot of ways where we were by each others side through it all but I will never comprehend the pain and anguish Jamie deals with everyday.  She does really good in her day to day activities, but no one will ever really know. 

What do you say to someone that has lost a child?  I do not know the answer to that.  I find myself struggling to find the right words when introduced to a grieving family.  So I truly understand when someone comes up to us at a loss for words.  I do know that this experience has taught me an important lesson about grief.  It is a phrase that I will try and never say to a parent who has lost a child.  I will never say, “I know what you are going through.”  I cannot say that because I do not know what they are going through.  Their child was not my child.  Their circumstances were not my circumstances.  Their grief is not the same as my grief.  I can relate with them in certain aspects, but I do not know what they are feeling.  I have had people tell me, “I recently lost my cat so I know what you are going through” or “when I was little I lost my sister so I know exactly how you feel.”  I was not offended when they said that because I knew they were just trying to connect and relate with us.  I believe this personal rule goes for almost any difficult trial someone is enduring.  Everyone handles it different and we just have to do our best not to judge or criticize. 

Like I said before, I was the closest person to Jamie through this whole ordeal and even I do not know what she is going through.  There is only one person who knows, and that is Jesus Christ.  It literally hurts my brain to try and understand how encompassing the atonement is.  There are some wonderful talks and study guides that are helpful in learning about the atonement, but when it comes down to it the atonement of Christ is about as personal as it gets.  It is something so spiritual and sacred the English language cannot adequately describe it.  It is something you have to experience for yourself before you will start to understand.  Through His suffering in Gethsemane that was carried to the cross and sealed with His death, Jesus Christ is the only one that understands what I went through, what Jamie went through and what we all continue to go through. 

Diabetes

The diabetic online community has been absolutely amazing to our family.  Right off the bat they offered help but most of all they offered love.  However, I do feel a certain disconnect with other parents raising a child with type 1 diabetes.  A few days after being moved from the PICU to the Children’s Medical Unit (CMU), a nurse came in to educate us about T1D.  After about 10 minutes she could tell we were completely overwhelmed.  A look I’m sure she gets from parents all the time.  Not only did Kycie have T1D, but she also had a severe traumatic brain injury.  We were still trying to process the fact that Kycie may never talk, walk or feed herself again and diabetes was not at the forefront of our mind.  The nurse recognized that and changed her teaching methods to teach us little by little.  While in the hospital, we learned a lot about managing diabetes, giving shots and counting carbs.  If her sugars were acting up (or down) there was always a pediatric endocrinologist down the hall to call on.  We only cared for a diabetic child for 6 weeks on our own.  6 weeks!

I have been asked to help diabetic communities from Dubai, to the United Kingdom.  From Australia, Israel, Canada and about 25 other countries.  We have remained close with JDRF and I was honored to run for the Joslin Diabetes Center in Boston.  I look at some of the moms and dads that act as T1D activists and admire them for their dedication and desire.  I do not know how they do it.  We have set up The Kisses For Kycie Foundation to help bring awareness and education to type 1-diabetes.  To be honest, I don’t know what to do with it.  It can be a full time job, and I already have two full time jobs.  I have decided that I will likely join some other board somewhere and help them when I can.  I would like to do one fundraising event a year, preferably here in St. George and Southern Utah.  This is Kycie’s home!  People know her here and I would love for her legacy to continue all over, but especially in her hometown. 

I am not into politics.  Politics frustrate me.  There definitely is a place for advocating awareness and improved care for T1D in legislation and in Washington.  But that is not me.  I personally feel that government should stay out of medicine.  When I have time, I would like to focus on hospitals and schools of medicine.  I would like to work with the doctors and health care facilities and teach them what I know.  I understand that I am naive and green when it comes to these things, but I believe I have something that could help them and ultimately improve the quality of care in America.  I would like to see large health care organizations such as Intermountain Health Care and Kaiser work within their own framework in changing screening protocols for type 1-diabetes.  That gets into hospital politics, which is equally as frustrating, but something I am willing to try.

I am also ready to make a change in St. George and Southern Utah.  We need pediatric specialists that will be able to care for our growing, yet isolated community.  For me, this is at the forefront and I will do everything in my power to make a change.  

I write this tonight with a heavy heart as I think of one year ago.  In the next day or so I will write about Kycie's final three days here on earth.  Tonight I want to remember Kycie as I see her in my mind.  I do not see her as a little girl with a brain injury fighting to regain all that she lost.  My most vivid memories of Kycie are best depicted in the video I made for her funeral.  From the time she turn 5 years old until just a few weeks before her injury.  

This is Kycie.

Created for Kycie's viewing. From when she turned 5 up to the week she got sick. #kissesforkycie

This is why the song "Photograph" hits me harder than "Fight Song".  It is how I remember my little girl.

She is not going to make it.

Sleep was a true luxury over the past 5 months, but even this was stretching it for me.  I did my best to concentrate through work knowing Kycie and Jamie were at the hospital.  The lack of sleep was also making me extra emotional.  There was a constant lump in my throat and tears filled my eyes each time I let my guard down.  My mind wandered to the time Kycie got mad at me.  I'm pretty tough on our boys, but I rarely even raised my voice at Kycie.  She was too perfect.  I thought about the time I yelled at her and she ran to her room.  After a few minutes I felt bad and went upstairs to find her.  Kycie had crawled under her bed and was crying.  I knew I was tired because I normally wouldn't allow my thoughts to drift to sad memories like that.  I was able to get off work an hour early and arrived at the pediatric unit just after 4:00 on June 30th.  

Jamie was a beautiful mess, so I told her to go home and shower while I watched after Kycie.  She had been doing great all day.  She was on 1.0 liter of oxygen and only seemed uncomfortable when she coughed.  There was a nurse shift change just about the same time Jamie left for home.  I stayed in Kycie's room and watched her oxygen levels.  They kept dipping below 90 so the nurse came in and increased her oxygen to 1.5L.  About 15 minutes later they dropped again, and again the nurse increased the oxygen to 2.0.  Then 2.5 and finally 3.0.  In less than an hour Kycie went from 1.0 to 3.0L of oxygen to keep her saturation levels above 90.  She also seemed to be much more uncomfortable than she was when I first got there.  Her breathing rate had increased and she was grunting and groaning more.  I pointed this out to the nurse, but because she had just started her shift she didn't have anything to compare it to.  A call was made to Kycie's pediatrician.  He was still in clinic and would come as soon as he could.  In the mean time, he ordered another chest x-ray.  Jamie and her brother arrived just as they were finishing the x-ray.  Her brother assisted me in giving Kycie a blessing.  Things didn't feel right, something was off.

I looked out the door and could see Kycie's pediatrician sitting at the nurses station looking at a computer.  I went out and sat next to him.  With a very deflated look on his face, he turned to me and said, "I got you a flight to Salt Lake."  

He reviewed the x-ray of Kycie's lungs from early that morning.  He then compared them to the one that was just taken.  "Kycie has pneumothorax".  It is when air leaks into the space between your lungs and chest wall.  The air is pushing on the outside of Kycie's lungs, causing them to collapse.  "I'm so sorry" he said.  "LifeFlight has been dispatched and they will be here in about 15 minutes."  That is 15 minutes to get to the hospital.  Load Kycie up and transfer her to the airport via ambulance.  That will be another 30 minutes.  The flight is 50 minutes and then another 20 minute ambulance ride to Primary Children's.  Almost 2 hours before Kycie will get to PCMC.  Jamie will fly with Kycie and I will have to drive.  It is nearly a 5 hour drive so I started to make phone calls to get things arranged.  

Kycie was noticeably getting worse.  Tears would roll down her cheeks as she would groan in pain.  I was still making phone calls when Kycie's doctor came back into the room.  "Primary Children's called and canceled our LifeFlight.  They are scrambling their own team together in Salt Lake."  So that means LifeFlight won't even get to Kycie for an hour and a half at the soonest! 

"Why did they do that?" I asked.  He shrugged his shoulders and said, "I am not really sure."  I walked around confused.  I struggled to collect my thoughts and make sense of it all.  I was beyond exhausted, Kycie was getting worse by the second, nurses and doctors start to scurry around the hall and Jamie was calling family to help get the boys to Kycie's room ASAP.  What is wrong with our LifeFlight?  Is Kycie that complicated that she needs a specialized team?  She must not be too bad if they are willing to risk two more hours.  Do they know something I don't know?

Keaton still comes down into our room a few times a month crying because he misses Kycie.  He struggles to focus his thoughts on positive memories.  It is easy for Keaton to think about all the times he teased Kycie and was mean to her.  It is hard for him to remember how he would sit with her and play beanie boos.  He didn't like beanie boos at all, but he would play with them if Kycie asked.  It is difficult for Keaton to remember things like helping Kycie learn to ride a bike and teaching her how to catch a lizard.  I guess for an 8 year old it is harder to forget the guilt of teasing his little sister than it is to remember the joy of being her friend.

The boys had all had a chance to talk to Kycie and give her a kiss.  None of them said goodbye as they had no doubt they would see her again.  They had attached a mask to Kycie to help with the oxygen and staff was scrambling all over.  Keaton stood on the side of his little sisters bed and held her hand.  In one of the most tender displays of charity, Keaton softly held Kycie's hand and whispered to her.  I couldn't hear what he told her over the beeping of machines and background chatter.  I hope to one day know what his spirit was trying to tell hers.

At this point I really don't know what was going on.  I can only assume on most of it.  It was decided that they couldn't wait for PCMC crew to get there and that Kycie needed to be intubated.  The room got really intense really fast.  Jamie and I stepped into the doorway and watched as a team of doctors and nurses surrounded Kycie.  I felt a sense of unknown, like they were doing this for the first time.  It was obvious that something wasn't right when at one point one of the doctors left the room and made a dead sprint to the end of the hallway.  He was gone for about 15 minutes while the rest of the crew working on Kycie spoke to each other slowly, loudly and with emphasis on clarity.  

Angles speak by the power of the Holy Ghost.  Sometimes it is soft and quiet, other times it makes the hair on your arms and neck stand up.  Sometimes they speak to you but it takes days, weeks, months or years before you understand what they said.  Jamie went back into Kycie's room and sat on the floor.  She brought her knees up to her chest and wrapped her arms around them.  "She is not going to make it!"  Loud and clear.  Jamie watched for a second time in less than 6 months as a team of doctors tried to insert a breathing tube into her little girl to save her life.  This time she is not going to make it.  I am watching my child die.  

We found out later that a lot of the tension and stress while intubating Kycie was because they did not have the proper tube to intubate.  There must have been a discussion about just using the tube they had available or to wait for the proper tube.  The tube that the doctor wanted had a balloon on it to help keep Kycie's airway open.  For some reason it wasn't stocked in the pediatric unit and one of the doctors had to personally run to the main hospital a few miles away to get it.  To make things worse, the only ventilator available in the pediatric unit wasn't the one Kycie needed.  The one Kycie needed was 2 miles away at the main hospital.  When I learned about this, it started to make sense why there was so much confusion and tension in the room.

Honestly, the doctors and nurses did an absolute amazing job with tools they were given.  They were able to think on the spot, improvise with what they had and successfully intubate Kycie.  They manually compensated for what the ventilator couldn't do until the crew from Primary Children's arrived.

I needed to get on the road as Jamie and Kycie would get to Salt Lake hours before me.  The PCMC crew hadn't arrived at Dixie Regional yet by the time I left.  It was around 11:00 pm when I started the long drive on little sleep.  The drive seemed eerily familiar.  I remember driving the first time Kycie was LifeFlighted and thinking "I hope the plane doesn't crash."  This time I was sick with the thought of her passing away before I got there.  Just before I left Kycie's room, I leaned down and kissed her ear.  "You have to wait for me Kycie!  You have to at least wait until I get to Salt Lake."

The specialized crew had gathered around Kycie and prepped her for a chest tube.  A chest tube is placed to drain the air that has collected around Kycie's lungs.  You first prepare the area of that the tube will be inserted and inject an anesthetic.  An incision is made between two ribs and the tube is placed and secured.  They prepared and disinfected under Kycie's left armpit.  An injection of anesthetic was given and they prepared to make the incision.  "Check!  Left side or right side?"  Someone checked the chart again.  "Right side.  Not left side.  Start preparing her right side."  

It was pretty messy and even embarrassing but Kycie was finally safely loaded onto the airplane and they lifted off.  No pediatric tubing in the pediatric unit.  Proper pediatric ventilator not stocked on the pediatric floor, or even correct building.  Preparing the wrong side of Kycie's chest for placement of chest tube.  However, despite the rough evening, Jamie felt at complete ease on the plane with the special team tending to all of Kycie's needs.  An peaceful feeling came over Jamie and she slipped in and out of sleep. Kycie was in bad shape, but she was looking better and was in good hands.

The sun windows of Kycie's enclosed PICU room at PCMC were glowing with sunlight.  I had fallen asleep on a chair with my head resting on Kycie's bed and my hand holding her hand.  This go around was going to be different.  Everyone already knew us.  They knew Kycie.  I wasn't sure if they knew us from the our long first round at the PICU or if they seen Kycie's news story or even followed her Facebook page.  Jamie and I were much more calm.  We took the time to talk to the attending doctors, fellows, residents, nurses and technicians.  Kycie was still sedated and intubated when a man walked into our room, asked the nurse to leave and shut the door.   

How Much Can She Take?

Before Kycie was discharged from Primary Children's Hospital in July of 2015, a team of doctors and nurses sat down with us to discuss her care and what we might expect.  Kycie had made some miraculous and amazing progress during her 111 days at the children's hospital.  She had surpassed all expectations to the point that her rehabilitation progress had plateaued and it was time for Kycie to go home.  However, facts are facts.  My background is science, major in biology, minor in chemistry and doctor of optometry.  I have faith, and Kycie's experience helped grow my faith in ways I couldn't imagine.  However, I'm also a realist.  People would send us messages saying if we believe and have faith Kycie would return to the way she was before her injury.  The scientist in me told me that would never happen.  There was too much damage.  I had faith that she would progress and get a little better, but some things cannot be reversed.  Of course all things are possible with God, but I also have to believe in the will of God.  Kycie had a severe traumatic brain injury caused by lack of oxygen that has affected her profoundly in many ways.  Kycie cannot feed herself, walk or talk, but those were just some small problems considering.  Her body's ability to control body temperature, digest and properly process food and the fact that her pancreas has decided it doesn't want to produce insulin anymore are all much more difficult to manage and are largely out of our control.  Some of the most basic reflexes we all take for granted every day were significantly depressed for Kycie.  Kycie could not give us a good, productive cough when something was in her throat.  This would prove to be a problem and the doctors knew it.  

They went over a  stack of papers with things to do for Kycie.  It would take us 30 minutes just to prepare her medications.  We gave her medications four times a day and that adds up to 2 hours each day preparing meds.  Actually giving Kycie her medications, and then slow process of feeding her blended food through her g-tube took another hour.  Six hours a day would be spent preparing and then feeding Kycie.  It was important to sit next to her the entire time to make sure she didn't throw up.  Throwing up could cause Kycie to aspirate and she would drown in her own vomit if someone wasn't right next to her.  

Don't forget diabetes!  With everything going on we were still in Kycie's "honeymoon" phase were sometimes her pancreas would produce a little insulin and others nothing at all.  This complicated knowing what to do with her dosing of insulin.  Large swings of high and low sugars were pretty common.

The medical team continued to explain all these things to me and Jamie but there was a question that kept nagging at me.  I finally had a chance to ask.  "What is Kycie's life expectancy?"  They all kind of looked at each other before the attending physician told us that she expects Kycie to live as long as any other kid...I guess...Of course....Well...We need to remember a few important things.  Diabetes.  A type 1 diabetic has a life expectancy of about 12 years less than the general population.  Finally, after working through the question in her head and out loud for a few minutes the doctor said, "pneumonia is your number one concern."

Having Kycie home was something I cannot adequately describe.  I could spend hours and hours writing about the little things that happened in our house while Kycie was home.  Like most things, time and retrospective thinking helps to put the puzzle pieces together.  Even now I will have moments that bring me back to Kycie and I understand life just a little better. It is obvious to me now that we were running on borrowed time.  Truly, Kycie should have left us back on January 30th.  It makes me think of the poem, footprints in the sand, by Mary Stevenson.  She talks about looking back at her life and noticing two sets of foot prints in the sand.  Her own and the Lords.  It troubled her that during the times of greatest sadness and trial she only noticed one set of foot prints and asked the Lord why He would leave her during such times of peril.  

"He whispered, My precious child, I love you and will never leave you
Never, ever, during your trials and testings.
When you saw only one set of footprints,
It was then that I carried you."

There was no doubt we were carried during the 6 weeks Kycie was home.  Some experiences too sacred to share.  We didn't leave home too much.  We took Kycie to get ice cream one time, once we took her to get a slush and once to the mall.  All excursions were short as the heat of the St. George summer was more than her body could handle.  Unable to regulate her body temperature very well Kycie easily became uncomfortably hot. 

A mild summer cold went through our home the last few weeks of June.  Some of the boys had a little cough, and Boston started to get a runny nose.  We did our best to keep the boys away from Kycie, but it was nearly impossible with Boston.  He loved to hold her hand, kiss her cheeks and sit on her lap.  It was hard to know for sure, but I was starting to suspect that Kycie was getting a cold too.  Concerned, we cautiously accepted an invitation to ride up to Pine Valley mountain for some tin foil dinners and to escape the heat for an afternoon.  It was nice to take Kycie outside and not have her overheat.

It was Sunday, June 28th.  Kycie definitely had caught what the boys had and we had been struggling for a few days now keeping her comfortable.  Jamie took the boys to church and I stayed home with Kycie.  I did my best to prepare meds and meals alone, Jamie is much better at it than me.  Each time before a meal we check Kycie's blood sugar.  She was high, in the 200's.  I dosed Kycie's insulin appropriately, gave her a shot and then started her feed.  I watched Kycie's Dexcom through her meal and it slowly kept going up.  Within 30 minutes it had two arrows up and I didn't now what to do.  Her blood sugar was approaching 400 and I had just given her lantus and humolog injections of insulin.  I worried that if I gave her more she would crash, but worried if I didn't she would go into DKA.  This was our first experience with the madness of T1D.  Feeling helpless, I put a call into the nurse at Primary Children's.  Kycie couldn't tell me if she didn't feel good, she could only grunt and groan.  

That night Jamie sat at Kycie's bedside and wept.  The weight of the situation pressed Jamie into an unusual dark corner.  How much can Kycie take?  She is obviously struggling to breath, her sugars are all over the place, she is not sleeping well and she keeps throwing up.  Monday we got Kycie in to see her pediatrician.  He listened to her lungs and ordered a chest x-ray.  The x-ray was clean so he started Kycie on a strong antibiotic.  He feared it was viral, but we decided to try an antibiotic just in case.  

That night, Kycie was still struggling to cough and catch her breath.  Jamie got Kycie into the bath and started to wash her hair.  This typically would calm Kycie but this time she started to cough.  Slowly a hint of pink rolled out of the corner of her mouth.  Jamie swabbed her finger into Kycie's mouth and retrieved a good amount of blood.  A flash of panic swept over Jamie as she screamed for help.  We quickly got Kycie out of the bath and laid her down in front of our bed.  We got her dressed into her pajamas but couldn't find any more blood.  Was it blood?  Kycie let out another cough and again she spit out a little blood.  We were able to get a hold of the pediatricians office and speak to the nurse and later the doctor.  

Our poor doctor!  He inherited Kycie as a patient when we brought her home in May.  By far his most complicated patient who, I'm sure, stressed him out just thinking about her each night before he went to bed. 

"Is the blood just pink or are there small bubbles in it?"  Just pink could be that the dryness and coughing caused the back of her throat to split and bleed.  If the blood had little bubbles in it, it's likely coming from her lungs.  We did our best to inspect and determined that there were no bubbles.  A local medical supply company delivered a pulse oximeter after hours to our house so we could watch her oxygen levels through the night.  Kycie didn't sleep much Sunday night, and both Jamie and I would take turns throughout the night adjusting her, suctioning mucous from her mouth or just laying by her.  Both of us were running very low on sleep so I offered to take the first shift and Jamie could sleep.

I laid on the floor at the foot of our bed next to Kycie's bed.  I didn't have a good feeling.  This was all new and uncomfortable.  A few weeks before, I had a conversation with Kycie's pediatrician.  I told him I was concerned that every time Kycie gets sick they would LifeFlight her to Salt Lake City.  St. George does not have any pediatric specialists and the adult ICU doctors wouldn't be comfortable caring for her.  Dixie Regional Hospital draws from over 250,000 people, but they have never invested into pediatrics.  They have a NICU, but no PICU.  He assured me that he would do everything he could to keep Kycie in St. George so we wouldn't have to make the long commute if anything were to happen.  To get to Primary Children's on a fixed wing aircraft takes almost two hours, if the airplane and LifeFlight crew are ready at time of need.  I thought about how isolated we were in Southern Utah.  I wondered if I was making a mistake by living here.  I thought about life, and how drastically and quickly mine had changed.  I thought about a lot of things because about every 10 minutes Kycie's pulse oximeter alarm would go off indicating her oxygen level dipped below 90.

For most of the night Kycie's oxygen would stay right around 100.  It would dip below 90 but bounce up quickly.  Around 1:00 a.m. I noticed her oxygen dipped into the 80's a few times then would hang out in the low 90's.  I woke Jamie up and we watched her close for another half hour.  Now it was consistently below 90 and a few times into the high 70's.  I shook my head and looked up.  "Really?  What am I supposed to do?"  We decided to call a relative to come stay with the kids and we would get Kycie to the emergency room.  I held Kycie and Jamie drove.  As we pulled out of our dive way "Fight Song" came on the radio.  I cried all the way to the hospital.

The ER doctor came into the room as Kycie was now on oxygen.  "This is pretty easy for me, I am admitting you to the pediatric unit."  The pediatric unit is located at the old hospital a few miles away.  It was almost 5:00 am as they loaded Kycie and Jamie onto an ambulance for the short drive.  I decided to go home, shower and get ready for work.  I had already missed so much work and felt we couldn't miss more days.  Before going to work with absolutely no sleep that night and only a few poor hours of sleep the night before I stopped into Kycie's new room at the St. George Pediatric unit.  

Kycie was doing much better as I left for work.  However, within 10 hours things would drastically change.  Events that would cast serious doubt in my mind and cause me to  ask very difficult questions.

Welcome Home Kycie

“Josh, pull over quick!”  Kycie had just thrown up for the third time in two hours.  Every time we would feed her, she would throw it right back up.  This was a problem as we had just dosed her insulin and her blood sugar was plummeting.  I pulled our heavily loaded Yukon XL onto the right shoulder of Interstate-15 and quickly ran around to the back of the car to grab what I could to help.  The Yukon was stuffed tight with Kycie’s wheel chair and months of living supplies from the hospital.  Kycie hadn’t even been released form Primary Children’s Hospital for 5 hours and I am already looking for my escape route.  The rain had quickly soaked through my jacket and the passing cars sprayed me with a muddy mixture of water and dirt.  Jamie had undressed Kycie and was trying to clean her off best she could while I held up a towel to shield them from the relentless rain, at the same time allowing the smell of an orange color puréed food/vomit to escape the crowded car.  I felt bad for our two passengers, Autumn and Emily, who had come to help.

We had no idea how Kycie would handle the 310 mile drive from Primary Children's Hospital in Salt Lake City to her house in St. George.

I handed Jamie a container of apple juice that would be used to try and bump Kycie’s blood sugar up.  Kycie cannot swallow, so food and liquid must be pushed by hand with a 50ml syringe through her g-tube.  Her glucose meter read 45 and I was pretty sure there was no food left in her belly as most of it was in her car seat or on the back side of the passenger seat.  No doctors to help, no nurses to call on.  No bed to lie her down on or a sink to use.  Jamie and I had to rely on the training we received at the hospital and try and keep a cool head.  We "burned" our exit strategy 111 days ago.  We were 100% committed to taking care of Kycie, even when it seemed like we were trapped and we had exhausted all of our strength.  We had to dig deep and find a way.

You see, in 1519 there was a Spanish Conquistador named Hernán Cortés that landed on the inland plateau of Mexico.  Cortés and his 600 men, 16 horses, and 11 boats set out to do what no other army in the previous 600 years was able to do.  Conquer an empire and colonize Mexico.  No matter his motives, Cortés was able to motivate, inspire and embolden his troops to do the impossible.  Shortly after the army of Cortés landed on the seashore, they marched inland off the sandy beaches of the Yucatan Peninsula toward their enemies.  It was then that Cortés gave the order: “Burn the boats.”

The decision to burn the boats was bold and could have backfired.  If Cortés and his men were on the brink of defeat, there wasn’t an exit strategy in place to save their lives.  With no way out, they had two choices – die or fight with enough character to ensure victory.

The first few days in the hospital were very difficult for our family.   Not knowing if Kycie was going to live or die always had us on an unwelcome roller coaster of emotions.  They explained to us that the areas of Kycie’s brain injury controlled most of her unconscious and autonomic functions like heartbeat, breathing and body temperature just to name a few.  These automatic functions, once life support was turned off, would likely stop and she would die.  If she doesn't immediately die, we are looking at the possibility of Kycie living out the remaining days of her life confined to a bed in a vegetative state.  In those early days at the hospital, Kycie was able to give us a glimmer of hope when she cracked open her eyes for a few seconds.  Letting her parents know that she was still in there and that all hope was not lost.

The night after Kycie opened her eyes, Jamie and I took up our regular positions where we keeled on either side of the bed with Kycie in the middle laying on the bed.  We had stayed up late the night before discussing our options and what was in the best interest, not only for Kycie, but also for our other 5 boys.  We decided we were going to leave it up to Kycie, having faith in our Heavenly Father that he would grant her the agency to choose.  As we knelt across her with our hands intertwined on her chest, we told Kycie she could go heaven if she wanted.  Mom and dad would be very sad and would miss her very much, but we would be okay and completely understand her decision.  However, if Kycie decided to stay and fight, we would be 100% committed to taking care of her.   In a sense, we told Kycie that we would burn the boats.  We would have to burn the vessels in our mind that was keeping afloat anger, fear, doubt and frustration.  That night the three of us decided to go all in, and no matter how hard things would get, there was no turning back.

We were back on the freeway again trying to get Kycie back to her own bed for the first time in over 100 days.  Many friends, family and complete strangers were also anxiously awaiting her return.  The St. George police and fire departments had arranged an escort as we neared our home.  The community had gathered along the road with signs and banners while close friends and family crowded in front of our home, along with all of Kycie’s friends from pre-school and her church primary classes. 

I started to question our decision to give Kycie a homecoming as it started to look more and more like we might have to stop at the emergency room once we pulled into St. George.  Of course we were new at this whole diabetes game, even though she had been diagnosed almost 5 months ago.   Jamie pricked Kycie’s finger every 10 minutes and celebrated each raising point in her blood sugar.  Her low blood sugar had Kycie clammy, upset and shaking.  It was still raining as we pulled into the church parking lot on River Road in St. George to meet with the police and fire escort.  Kycie was naked and wrapped in a blanket so Jamie quickly changed her into her last clean pair of clothes and held her tight as we followed a police care and fire truck toward our house and towards Kycie’s brothers.  Her blood sugar had slowly climbed to 65 and this seemly endless 5-hour drive was almost over.

A steady rain soaked the desert for almost the entire 310 mile drive south, but it became more intense as we pulled into the red rock landscape of St. George.  However, as the escort was only a mile from our house the rain eased and the clouds started to break. 'Welcome Home Kycie' banners were hanging from fences and on both sides of the street you could see children standing close to their parents  hoping to catch a glimpse of the little girl they had all been praying so earnestly for.  Still unsure how Kycie would react to loud noises, Jamie was reluctant to roll down the window for very long and kept her hand over Kycie's ears.  I could no longer swallow my tears as we pulled into our cul-de-sac and saw friends waving, family crying and dozens of little children holding a Welcome Home Kycie sign in front of our house.

He parted the heavens and came down (2 Samuel 22:10)

Rain clouds everywhere, except over Little Valley where Kycie was being welcomed home. (picture sent to us from someone in St. George.)

Amazingly, “He parted the heavens and came down” (2 Samuel 22:10).   The clouds literally opened up over our house as I put the car into park.  Pictures were sent from all over town capturing the scene of an angel’s return home in Little Valley.  Sunbeams broke through the dark sky and a rainbow arched over Washington fields.  Jamie rolled down the window and held her crippled little girl tightly in her arms as the children started to sing I Am A Child Of God. 

Police car and Fire truck in front and another car and truck behind us as we make the final turn up our street.

Kycie's friends gather for a picture before she arrives.

After singing I am a child of God, the children all let go of their pink balloon.

“I am a child of God.  And He has sent me here.  Has given me an early home.  With parents kind and dear.  Lead me, guide me, walk beside me.  Help me find the way.  Teach me all that I must do.  To live with him someday.”

We have sung 'I am a child of God' to Kycie since she was just a baby and was always a favorite song to sing her in the hospital.  It meant so much to us to pull up and hear the primary children sing this to Kycie.

With tears streaming down Jamie's cheeks, mother and daughter listen to the beautiful voices of the children singing to Kycie.

There were so many special, life long lessons learned that day.  One touching lesson for me was from a picture I received of Jamie holding Kycie.  Reminded of a painting depicting Matthew 9:35 of a mother holding her crippled daughter before Christ.  

It is possible that the mother in this painting had also burned her boats.  Having to destroy doubts, feelings of inadequacy, thoughts of self pity and lay everything upon the altar of Christ.  This is not lip service alone.  She was a doer of the word, not a hearer only.  How far did this mother have to walk to bring her sick child to Jesus?  How long had she taken care of her beautiful daughter before presenting her at the feet of Christ? 

We were still in the middle of our family storm when the picture below was taken.  We did not know what was ahead of us.  “O man of God, … follow after righteousness, godliness, faith, love, patience, meekness.  Fight the good fight, lay hold on eternal life.” (1 Tim. 6:11-12).  We cannot afford to have one foot in the fight, and one foot out!  We must “press forward with a steadfastness in Christ, having a perfect brightness of hope, and a love of God and of all men.” (2 Ne. 31:20)  Jamie and I were fully committed and had burned our boats long ago. 

“The work of a mother is hard, too often unheralded work. Please know that it is worth it then, now, and forever.” —Jeffrey R. Holland  

Keaton smile is priceless and Bryton holds Boston on his shoulders like he always did with Kycie.  You can see joy in everyones eyes.

Jamie carried her once spunky and full of life little girl up the driveway that she had so often played on.  Her legs were bent over one arm, her body sagged in the middle and her head cradled in Jamie’s bosom.  As the clouds began to close the sunbeams slowly faded and a light sprinkle of rain started to fall again.  Worried about Kycie’s low blood sugar, feeling exhausted from the endless drive from Salt Lake and with the lingering reality of the difficult road ahead, Jamie walked into the house after just a short wave of appreciation to all those who had come.   

Kycie was carried into our bedroom and was laid down on the make shift bed we had prepared in the corner next to the window.   After getting her settled, with a bath and a fresh coat of baby lotion, the commotion of the day started to fade.  Finally, after 111 days, our family of 8 were all under one roof again.  A tangible feeling of peace and serenity filled our home, as the eight of us were able kneel in prayer to regroup, reset and retire for the night.  

We were not alone that night or any night as a host of angels were round about to bear us up.  Getting Kycie home did not make things easier, in fact things were harder.  However, although things were harder, they were better.  Our girl was finally home.

I have reflected a lot about this day that happened one year ago.  I never noticed the break in the clouds and a pause in the rain that day.  I was too caught up in the moment to admire heaven smiling on our little girl 58 days before she would return to her Savior's arms.  We were lucky, because there were so many other people paying attention, taking pictures and documenting the event.  Had it not been for them, I would have missed this special gift from God.  There are so many families going through tough and difficult times.  Families who have lost a child or a wading through trial after trial.  I promise you, heaven has and does open up for you.  There are sunbeams over your house, but like me, you might not notice them.  I know God sends angels to help us even before our darkest hour.  Look back, and you will see what I mean.  Kycie's heavenly gift to our family was not unique.  However, the fact that so many people witnessed it was distinctly special.  Kycie is sealed to me and Jamie forever and this day was a powerful confirmation of that truth. 

KYCIE'S WELCOME HOME VIDEO

by AUTUMN SHIPP

Patch was one of the first to take care of Kycie after she was moved to the Neuro and Trauma Unit at PCMC.  He spent many nights with Jamie and Kycie and always treated Kycie like a princess.

Patch was not working the day Kycie was discharged, so he had to give an early good bye.

Tara was Kycie's Occupational Therapist.  She had to give Kycie an early goodbye as she was not working the day Kycie was discharged.  Every therapist loved Kycie like their own and it was an emotional goodbye.

Autumn Shipp came with us for Kycie's last day at PCMC and to make a video to help us remember this special day.  She took this picture of the three of us before we left the hospital.

Sealed together for time and all eternity

One of the many kids that worked in the gym with Kycie each day.  This guy has made amazing progress and I seen a video of him the other day on his stake board.  A true miracle if you knew his story.

Another miracle.  Severe head trauma from a high school rodeo accident, Garth and Kycie made an instant connection.  He is doing great today and is back on the rodeo team.

We didn't get a picture with all the therapists, but was happy to see this picture of Kycie and one of her Physical Therapist Amie.  She usually worked weekends with Kycie when dad was at the hospital.  She always pushed Kycie to improve with love and determination. 

Autumn Shipp is a rock star.  Dealing with her own family trials, she took time away from her brother Britton to help capture the day for us.  Britton is from St. George and was in a 4-wheeler accident that left him with a severe traumatic brain injury.  She does an amazing job capturing the real life moments and are thankful for what she did for our family.

Courtney was one of the many nurses that was there for Kycie every single day.  I wish we could have got a picture of all the nurses as they were truly angels on earth while at the hospital.  Many nights they would spend not only taking care of Kycie, but also sitting and holding Jamie through the difficult times.

She can get in trouble for kissing her patient, but this little Courtney was life saver.  I love this picture of her kissing Kycie goodbye.  

I spent hours and hours laying just like this.  Talking, singing or just listening to Kycie breath.  

Nurses and therapists gather to blow bubbles for Kycie as she leaves her pod and goes back home.

Christina was Kycie's nurse practitioner that was in charge of Kycie's care every week at the hospital.  The rehab doctors would rotate and Kycie would get a different doctor every few weeks.  Christina was always there and became very close friends with Jamie.  She is perfect in every way and dearly missed. 

Daxton and his cousin wait for Kycie's arrival.

Waiting for Kycie

Pulling into the cul-de-sac

Boston seems more interested in the fire truck

A quick hello

and thank you

and goodbye

After Kycie went back into the house

Most likely would have been Kycie's Kindergarten teacher.  Mrs. Ybright lived around the corner from Kycie.

Finally a ride in a real fire truck.

Boston

Trey

Bryton

After getting Kycie situated in the house with some family, Jamie came back out to thank all those who had come.

Jamie missed this little princesses growing up after 5 months in the hospital.

The sun disappeared and the rain began to fall again.

Jamie talking to Kycie and telling her she is home again!

Getting ready for a bath always brought tears.

Boston was fast asleep, but we were able to get a picture with this crew.  Kycie was wiped out and ready for some sleep.

And finally a kiss and hug from each of her boys before they went to bed.  Keaton.

Treyton

Daxton

Bryton.  There were no dry eyes in our house that night.  Sincere prayers of thanks were offered.