Kisses For Kycie

#kissesforkycie #t1d

Refiners Fire

Joshua TerryComment

I figure we traveled over 13,000 miles driving or flying back and forth between St. George and Salt Lake City from January to July 2015.  On July 8th I was making my last drive from Salt Lake to St. George.  Jamie was in the passenger seat with Kycie in the back securely, but uncomfortably riding in her car seat.

   Kycie loaded in her car seat on July 8th, 2015 for her ride back to St. George.

Kycie loaded in her car seat on July 8th, 2015 for her ride back to St. George.

This drive was different in so many ways.  It felt different, something was off but I couldn't put my finger on it.  Our drive started in the Rocky Mountains of the Wasatch front and continued through the edge of the Great Basin along I-15 which eventually drops into the northeastern tip of the Mohave desert including St. George.  Most of the drive was spent in deep reflection and confused conversation.  Jamie had a strong impression before they LifeFlighted Kycie that we would not be bringing her home this trip.  When Kycie arrived at Primary Children's Hospital and was assessed by the specialist they told us Kycie was very sick and to be prepared for her to get worse before she would get better.  During this stay at the children's hospital I saw Kycie suffer in a way I could hardly bare.  A suffering I could not imagine but had to witness. 

Being back in the PICU was a surreal experience to say the least.  The smells and sounds brought back a cascade of flashbacks from our first experience.  Kycie's bed was only two away from the bed she occupied back in February.  I arrived at 3:00 in the morning to a heavily sedated but stable little girl and an exhausted mother.  The next morning Kycie got some of her color back but was still really puffy due to the air that had moved from her chest cavity up around her neck.  

   So many tubes.  Kycie has a large bruise from her CGM (continuous glucose monitor) located just below her g-tube port.  A pic-line was put into her right wrist.  Kycie's neck and face are still puffy from the pneumothorax.  

So many tubes.  Kycie has a large bruise from her CGM (continuous glucose monitor) located just below her g-tube port.  A pic-line was put into her right wrist.  Kycie's neck and face are still puffy from the pneumothorax.  

Kycie had been so wiggly and irritable the previous week it was weird to have her just lay there.  There was a lot of down time to sit and think.  I was still bugged about what happened at the hospital in St. George.  I was trying to put it all together but the puzzle pieces were not matching.  Jamie had told me there was another hiccup after the pediatric team arrived in St. George in placing the chest tube.  A doctor had just come into the room and asked the nurse to leave so he could speak with me and Jamie alone.  He introduced himself and his administrative position with LifeFlight.  The doctor wanted us to know that they were aware of what happened.  He was very sincere in wanting us to understand and know exactly what happened with the chest tube.  Other than an unnecessary injection, no harm was done.  However, a review would be made to help make sure these things don't happen in the future.  I was grateful for his honesty in being upfront with us and appreciated his sincerity.  

   The first few days all we could do was wait and watch.

The first few days all we could do was wait and watch.

For the next day or so I sat in the corner of Kycie's room trying to make sense of everything.  There were a few windows near the ceiling facing east.  This allowed a little natural light into the unnatural room with glass walls.  We definitely had unanswered questions from Kycie's first transport back in January so the visit from LifeFlight really confused me.  Why did such a high ranking administrator personally visit our room for a mishap that caused absolutely no complications?  Maybe that is just protocol...probably is.  Was it coincidental and he just so happened to be on the floor?  During our first stay in the PICU we were advised to concentrate on Kycie and that is exactly what we did.  However, I still couldn't fit the pieces together.  I was at a loss.

We were about an hour into our drive home with Kycie when Jamie spoke up,  "Josh, I am so confused.  I had a very distinct feeling that we would not be bringing Kycie home with us today."   We talked about it for quite some time.  What I had felt, what she had felt and what we both thought.  We muddled through the difference of a prompting from God or just a motherly worry.  I had turned my rear view mirror so that I could see and watch Kycie.  She appeared calm, much different from our first trip home from the hospital where we struggled to control her blood sugars.  I just knew getting her home would help calm the storm of mental anguish Kycie just went through and is still going through.

Everyone was amazed at how well Kycie started to rebound after getting to the PICU.  With the type of virus Kycie tested positive for, they figured she would get much worse before she started to get better.  From the first day in the PICU Kycie started to improve.  There wasn't a lot we could do except watch and wait.  The attending PICU intesivist would stop by our room and chat on her down time.  She was very easy to talk to and relate with.  We talked about family, kids, work and we talked about life.  As she became more comfortable with us, I remember her asking me, "Josh, what are you going to do if this happens again?  Because it will happen again."  

What do I do as her father?  When do I say enough is enough?  I had asked myself these questions a thousand times over the past 6 months.  We had been on this roller coaster before and it doesn't seem to want to stop. I have no choice but to hang on for the bumpy ride until it finally comes to a stop.  How do I make the decision to let her go?  I know if roles were reversed and I was lying in a bed unable to walk, talk or feed myself as a result of a severe brain injury I would want someone to listen to what I want not what they want.  The mere thought of signing a DNR (do not resuscitate) brought a wave of guilt and I prayed that I would never have to make that decision.

Two nurses walked into our room on July 4th and said they were ready to extubate.  They positioned themselves around Kycie and got ready to take the breathing tube out of her throat.  I paused with fear and asked who else was going to help.  Surely they needed more than just two people.

Up until this point, my worst experience at the PICU was watching them extubate Kycie back in February.  Replaying the procedure in my mind would bring instant tears to my eyes.  It would take too long to explain the events leading up to Kycie's first extubation, but mentally we had prepared ourselves for the possibility that Kycie might die soon after them removing the tube.  There were at least 8 professionals in the room as they slid the tube out of Kycie's throat in February.  Everyone froze for what seemed like an eternity.  All anyone could do was watch and see if Kycie could breath on her own.  Jamie and I knelt at the foot of her bed sobbing and pleading with her to breath.  She gasped for air over and over as you could see her stomach recoil in and her chest push out as if her lungs were demanding oxygen but her throat would not allow any in.  She looked like she was drowning and we were unable to help her.  After 10 or so seconds Kycie was finally able to catch a breath and eventually she able to breath on her own.  The extubation in February haunted me and I prayed I would never see it again.   

   Happy 4th of July!!!  Looking so much better with her color returned and swelling going down.

Happy 4th of July!!!  Looking so much better with her color returned and swelling going down.

This time it was just two nurses.  They quickly slid the tube out and Kycie gagged and vomited.  They rolled her to her side and cleaned her up.  Just like that Kycie was breathing on her own.  That wasn't so bad I guess.  Jamie celebrated her first 4th of July outside of Richfield in the PICU with me and Kycie.  I felt relieved to be able to kiss Kycie's lips again without a tube and the smell of adhesive.  I was encouraged with her progress and thought the worst was over.

I recently read a talk called "Reflecting on the Marks of Jesus." by Daniel Peterson.  In it the speaker talks about Nicholas Wolterstorff's agonizing account of his grief in losing his son.  At one point Wolterstorff cries out in his anguish:  How is faith to endure, O God, when you allow all this scraping and tearing on us?  You have allowed rivers of blood to flow, mountains of suffering to pile up, sobs to becomes humanity's song - all without lifting a finger that we could see.  We strain to hear.  But instead of hearing an answer we catch sight of God himself scraped and torn.  Through our tears we see the tears of God (Wolterstorff Lament for a son).

Peterson continues:  For a long time I knew that God is not the impassive, unresponsive, unchanging being portrayed by the classical theologians.  I knew of the pathos of God.  I know of God's response of delight and of his response of displeasure.  But strangely, his suffering I never saw before.  God is not only the God of the sufferers but the God who suffers.  Christians know this because they understand that Jesus Christ is the perfect representation of the Father, and because Jesus himself died upon the cross - unjustly, painfully, and young.  Moreover, although he was "the resurrection, and the life." Jesus too sorrowed at loss, bereavement, and pain.  He mourned the death of Lazarus because he loved him.  John 11:35 ("Jesus wept") is well known as the shortest verse in the Bible.  It's less known, however, as one of the Bible's most significant passages.  But it is precisely that.  Why?  Because it demonstrates the Savior's personal care for humanity and shows him, though divine, to be emotionally involved with us.

   One of my favorite pictures.  Kycie's OP (Occupational Therapist) who worked so hard with Kycie during her previous 111 days at PCMC.  Jamie caught her giving Kycie a hug.  She whole heartedly loved little Sis.

One of my favorite pictures.  Kycie's OP (Occupational Therapist) who worked so hard with Kycie during her previous 111 days at PCMC.  Jamie caught her giving Kycie a hug.  She whole heartedly loved little Sis.

The doctors had slowly taken Kycie off the sedatives and she is now breathing without the help of a ventilator.  I fully expected Kycie to snap back into her normal routine and we would be well on our way home.  After waking up from sedatives wore off, Kycie could not fall back to sleep.  She had a glossy look to her eyes and she could not fixate on me.  She would let out long, drawn out moans and cries.  For hours she would open her mouth as wide as she could and cry with a rasp due to swollen vocal chords.  That night I sent a text to family:

...by the end of the night I could tell she was getting restless.  They gave her normal nighttime meds and a hour later she still was not asleep. She moaned and grunted.  Even a very sad and very soft cry sometimes.  I could tell something was night right.  At 11:00 they gave her some oxycodeine and another dose of nighttime meds.  No help.  Kycie was awake the entire night.  Never even closed her eyes.  I felt so bad for her.  Doctor believes she has delirium.  Happens sometimes when kids come into the PICU with very few windows, are sedated and put on pain meds only to come right back off them.  It messes with their circadian rhythm (sleep cycle).  I told the doctor that Kycie's circadian rhythm is already messed up with her brain injury.  She said that makes more sense because kids who already have a compromised circadian rhythm are more often affected.  So poor Kycie, on top of everything, now she is delirious.  

 Taking turns holding Kycie as she suffered from PICU delirium.

Taking turns holding Kycie as she suffered from PICU delirium.

The fellow told me she had written a paper on PICU delirium and explained that, as opposed to adult ICU delirium, pediatric ICU delirium is usually under recognized and under researched.  Delirium is not permanent, but may be associated with other long term complications. 

Watching Jamie hold Kycie for hours as she would cry without even blinking her eyes was more than I could handle.  It was literally busting my heart into a million pieces.  Kycie had already suffered so much, how much more could she take?  Like Wolterstoff I found myself crying to God in anguish.  Why?  This is not fair?  She is just a little girl, why does she have to suffer this much?  All I could do was shake my head in disbelief in what was happening.

   Jamie trying to comfort Kycie during a particularly difficult time.  Studies show an increase in morbidity and mortality of critically ill children who exhibit PICU delirium.

Jamie trying to comfort Kycie during a particularly difficult time.  Studies show an increase in morbidity and mortality of critically ill children who exhibit PICU delirium.

I don't know if I have the answer, but I think Kycie's suffering was a way for her to connect with her Savior.  So that she could personally and intimately identify with Him.  I do not know who Kycie was before she came to earth, but from the amount of suffering she endured and the identifying marks of Jesus she bore, I am positive she was one of the great and noble spirit children of our Heavenly Father.

   Not completely relieved of delirium symptoms, Kycie was able to send dad a smile.  I had gone back to St. George to work and Jamie sent me this picture saying "come get us." 

Not completely relieved of delirium symptoms, Kycie was able to send dad a smile.  I had gone back to St. George to work and Jamie sent me this picture saying "come get us." 

I have been told that grief is one of the most pure forms of love.  Watching Kycie suffer in the PICU again caused me immeasurable grief which resulted in limitless love for Kycie I did not know I possessed.  I then knew that if asked, I could love her enough to let her go.  I also knew that she loved her mom and dad enough that she would not leave unless we said it was okay.

Released more than a week sooner than expected, the three of us pulled into St. George the evening of Wednesday, July 8th.  Kycie's brothers were still with grandma and grandpa in Monroe.  We asked that they keep the boys there until Friday to give us a chance to get settled and give Kycie a little more time to recover.  Primary Children's had already scheduled a routine follow up Friday afternoon in St. George with Kycie's pediatrician.  He was happily surprised to see us as we walked into his office.

   Visiting NTU staff before heading back to St. George.

Visiting NTU staff before heading back to St. George.