Kisses For Kycie

#kissesforkycie #t1d

She is not going to make it.

Joshua Terry2 Comments

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.