Koltons Journey 7/20/2013 1/25/2017

By Grant Hessman Koltons Father Written 02/08/2017

The Beginning
Koltons journey started in the womb back in 2012 halfway into the development of his heart and body. Every visit to
the gynecologist would be a good one; they could hear his heart but were never able to see it. This went on for
several months until the gynecologist decided to send us to the UT Medical Center in Knoxville, TN. There we met
with the doctors and a more powerful Ultrasound Machine. Thats when they discovered Koltons heart was located
on the right side of his body and slightly turned backwards. They reported this back to our Cardiologists Dr. Liske
(formerly from Vanderbilt Childrens Hospital) where he delivered the news that Kolton had about a 5% chance of
living past his birth. Two heartbreaking revelations we had to deal with.

We continued on with positive thoughts and prayers. Closer to our delivery date we met back with Dr. Liske for
another ultrasound and after a very long one he told us he had some great news. He stated that it seems Kolton has
grown better than expected and I give him a 90 to 95% survival rate. Dr. Liske stated he still wasnt sure if Kolton
would need immediate surgery at birth to repair his heart but felt very confident that he would survive through
birth.

The Birth
July 18, 2013 my wife and I drove to Vanderbilt Medical Center for the birth of Kolton. We spent many hours in labor
but Kolton just wouldnt move. We made the decision to have a C to eliminate as much undo stress on Kolton and his
heart. The C section went as planned and Kolton was put on one of the transport incubator with a full medical team,
4 doctors, crash cart, other carts, and security. They tell me I have to go with Kolton and leave my wife with the
good doctors and nurses in delivery. We rush down the hallways through the 4th floor sky bridge to the NICU where
they begin poking, sticking, and hooking him up to all kinds of equipment. While other nurses perform the normal
birthing rituals. Im then introduced to an Echocardiologist. He states that Kolton is doing fine right now but we are
going to see what Kolton currently concerns are. So he spends at least two hours on Kolton and he writes in blue
eraser marker the following in the photo. The nurse fills in the other after he leaves. Im left with my head full of
what has just been told to me and holding my sons hand and wondering how my wife is doing all alone in the main
hospital.
First Meeting
After spending hours with my son I went back to see my wife Mimi and to tell her that she has a very beautiful son
that is doing well. After running all the tests and ultrasounds on him, Kolton didnt even need oxygen or any heart
medications. He was a normal baby boy with the following concerns.

Dextrocardia, Heterotaxy Syndrome, Atrioventricular Septal Defect (AVSD), Double Outlet Right Ventricle (DORV),
Congenitally Corrected Transposition of the Great Arteries (CCTGA), Pulmonary Stenosis (PS), Left Superior Vena
Cava (LSVC), Choledochal Cysts ,Asplenism, Hiatal Hernia, Microgastria, and Intestinal malrotation.

The following day my wife got into a wheelchair and I pushed her the long and slow way down the hall to see
Kolton. Her eyes lit up with joy and tears. It was the happiest Id seen her in a long time. The nurses put Kolton in her
arms and she held him for hours until they both fell asleep, both enjoying the feeling of each other in the most
calming manner.

The next day we met with two separate medical teams. The first is the medical team with the head Doctor Dai H.
Chung, he explained that Kolton has his intestines all on the right side of his body (fully functioning), Smaller
stomach Microgastria, Hiatal Hernia, a Cysts, and no spleen. He stated that in the next few months once Kolton
grows a little more he would need his first surgery to place the intestines in their normal place in the body and
remove the cysts.

Team two, the Cardiologists with the head Doctor Karla G. Christian. She explains that Kolton has a very complicated
heart, one that is rarely seen with this many types of defects in the same heart. Basically seven total defects of the
heart. The good news is that Kolton is strong (remember this word!!!) and is doing well on his own right now. He
does not need the first surgery normally needed for infants. Kolton will need a Bilateral Glenn in the next year or
two. So within a week or two we took Kolton home with no single issues at all or any medications except for
amoxicillin.

First Surgery
October 2013 was Koltons first surgery to place his intestines into the correct position. This surgery has zero
complications and within a week and a half we are released and back home recovering and healing.

2014
This year is going well and Kolton is growing and being the little fighter and strong boy hes meant to be. All his
checkups, with his Cardiologist, Dr. Like and Pediatrician Dr. Feld, are good and Kolton is growing better than most
CHD children by the growth charts. We went to numerous monthly doctor visits and many visits to Vanderbilt
Childrens Hospital until Koltons surgery in October.

October 2014 is the first major heart surgery Bilateral Glenn. We meet with Karla G. Christian and her staff prior to his
surgery and they explain the procedure and risk. The surgery would take 4-6 hours. Mimi and I raced to the recovery
room and were shocked at all the IVs, the long incision on his chest, and how swollen he was from the surgery. We
were moved to PICU for about 3-5 days and then later moved to the 7th floor were Kolton recovered with no
concerns. This surgery was flawless and Kolton recovered quickly. Koltons photo below the day of discharge.
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The Good Years - Nov 2014 to July 2016
After Koltons discharge we had no issues with his health or incision site. So from November 2014 all the way
through 2015 and into 2016 Kolton grew, thrived, and was a happy little boy. We took him all kinds of places from the
Chattanooga, Atlanta, Panama City, Pigeon Forge, Gatlinburg, Sacramento, San Jose, and San Francisco. He had a
blast where ever he went. He hardly ever complained and is happy little spirit, handsome looks got him everything
everywhere we went.

July 20, 2016 3 Yrs. Old Birthday

This was the birthday that Kolton understood. He really enjoyed his birthday. He sang happy birthday to himself and
wanted to blowout his #3 candle about 3-5 times. Because of Koltons condition his birthdays were always family and
a few of our friends. The one true friend Kolton had was Sophie, shes a few years older than Kolton. He didnt have
a lot of friends but was always surround by his family. I dont think there was ever a day a family member wasnt
with Kolton. He was loved like no other and enjoyed this birthday party as if it was he last. (Strange to think now it
was....)

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It Begins..
Sunday August 7th 2016 when begin with the drive from Knoxville to Nashville. We check in the Hotel and got a good
nights sleep. Monday August 8th in the morning was a visit to Dr. Christian for Pre-Op day to make sure everything
was a go for surgery the next day. Once everything was completed by midday we left to enjoy the rest of the day.
We checked into Ronald McDonald House then headed over to the park across the way to enjoy some family time
with Kolton. It was a hard day for us as parents, wanting to enjoy our time with him, yet worried at the same time for
whats to come tomorrow morning.

Tuesday August 9th 5:30am we are on the 3rd floor waiting room waiting on the hospital personal to check us in and
to be called back for the open heart surgery (Fontan). I remember this like it was yesterday. Kolton playing on the
couch with his matchbox cars not having a clue what was about to take place. Once we are called back and start
getting Kolton ready and trying to place him in a hospital gown, Kolton starts to realize and begins to cry and fuss.
So the team allows him to remain in his clothes until we get the sedative down him (so-called Happy Juice). Even
though Kolton had the happy juice in him he didnt like parting with us and heading to the O.R. We said mommy and
daddy love you and we will see you very soon. I dont think I have to tell anyone how hard that was to say and walk
away.

We are in the waiting room with my mom (Kay Perdue) for a total of 16 hours of Kolton being on the O.R. table. It
was so long that the hospital staff had left and turned out the lights in the waiting room and security was walking
through noticing we are the only ones left. Kolton was finally out and in recovery. We were taken to the 5th floor
PICU where Kolton remained stable the rest of the night and next day.

August 10th 2016 Kolton was doing fine in the morning until about mid-afternoon when the nurses alerted the
doctors and Dr. Christian. They brought over the crash cart and many other machines. As all of this is going on Dr.
Christian hands me a piece of paper to sign. She states that I need you to authorize emergency surgery on your son
or he will die. Kolton was having an issue with the Fontan and possible blood clot. They wheeled him down to O.R.
for another 4-6 hour surgery to correct the Fontan, remove a blood clot, and reopen a hole called a pop off hole that
is placed in the heart to allow extra blood to flow a different way.

Back to recovery after 4-6 hours of surgery and then back up to PICU. Kolton slowly healed over the next week or so
and we were transferred to the 7th floor cardiac unit.

Looking Promising
As Kolton progressed through the later part of August and into the first weeks of September he was healing, but
slower than he did with his Bilateral Glenn surgery. Doctors said it was mainly due to the second revision surgery on
the Fontan that had played a part in the slow healing process. Kolton did progress to the point that at the end of
September they were allowing us to be discharged. We left but Kolton had to be on 2 IV antibiotics, Lovonox blood
thinner (shot daily), and a portable woundvac that helps his incisions heal from his surgery.

Besides the IVs and the daily shot each day we had a pretty good time. Kolton loved being back home in his own
bed, watching his big screen TV and playing games. He seemed to be in good spirits but would not eat much, got
tired often, and wanted to sleep a lot. After being home a week we had a scheduled visit to Vanderbilt Childrens
Hospital for a checkup with Dr. Christian. After our checkup Dr. Christian decided to admit Kolton for at least a week
for nutrition and get him back to eating and to put little more weight on him. We were taken to the 7th floor Cardiac
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unit. Once we were there they started normal tests and an echocardiogram.

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We waited the rest of the day and spent time with Kolton until he fell asleep. Since we had nothing with us and did
not plan on being admitted we needed something. I made the three hour drive back to Knoxville to get all our
belongings, making it back to Vanderbilt around 3 or 4 in the morning.

PICU 5Th Floor We Never Leave This Floor

I slept on the couch in Koltons room until about 6-7 until Dr. Conrad came to see us. He stated Koltons echo wasnt
good and that his heart was not pumping like it should and that he needs medication to make that happen, he called
it a Milrinone and said it would help his heart pump better. Unfortunately, this could not be administered on the 7th
floor so we moved to the 5th floor PICU. Kolton did not like this, hes a smart child and knew we were headed to
another floor.

He started crying and saying daddy please No Duck, no number 3 no number 5, I want to go number 2 or number 1. I
want to go back number 7. I knew exactly what my son was telling me, he did not want to go in elevator the team
uses with the dreadful duck on the ceiling. At age three he knew which floors were the ones that things take place
that are not fun. He knew floor 3 was the (O.R.) and 5 was the (PICU) which is the reason he hated the 5th floor. To
him number 5 meant he could no longer freely leave his room and room all over the hospital, which he loved.

When we were on the 7th floor we could go anywhere in the hospital. We would push him in his little blue car or a
wheelchair all day long. This made him happy. We just had to make visits to the 7th floor for 2 hour vital checks or
medications. 5th floor PICU is not so user friendly we normally had to have limited time out of his room. When we
first got there Kolton was just on Milrinone which allowed us to push him around the unit unescorted but only on
the 5th floor and in the cardiac side. Kolton always wanted to go to the other floors and would get upset he couldnt
but wed always find a way to keep his mind off that by watching the helicopters takeoff and land and all the cars
driving everywhere outside the windows.

We were told due to Kolton not eating well hed need a feeding tube and a PIC line as well. Due to the problems his
entire stay from August until now (October 1st) Kolton has had issues with feeding tubes, not so much putting them
in as much as throwing them up. The only one that stayed in and was not a problem was an NJ-tube that is inserted
through the nose to the small intestines. Kolton had problems with the oral medications that had to be put in the NJ-
tube that only goes into the stomach. So they scheduled a procedure for the PIC line and the NJ-tube for the next
day.

The Turning Point

Around 9pm that night they decided to move us from PICU room 12 back to the back in room 38. For some reason
Kolton had a major issue with this and was screaming and crying. Which he has never done ever!!! So Mimi carried
him while I pushed his IV poll and the nurses moved everything else. Once in room 38 Kolton wasnt really settled
down he seemed to be a little upset so I asked him what was wrong. He said he wanted Lindsey (His nurse on the
7th floor) to come down here and he repeated that several times I told him that she works in the daytime and shes
not here right now. He still was upset she couldnt come, but I told him we would see her the next time she is at
work. Kolton for some reason liked Lindsey a lot. No matter what kind of procedure, Lovonox shot, or medications
hed have to take, if Lindsey was giving it to him hed have an issue with it but them high five her and smile. Those
two had a very special connection.

Around 12:30, the next afternoon we were called to the recovery area for these two procedures. We met the team
and they asked what procedures are we here for today. I told them a PIC line and a feeding tube placed NJ from the
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IR doctors. They seemed to look confused and said only a PIC line is on the schedule. So from 12:30pm until 3:30pm
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we sat in the recovery room, Kolton was very upset and crying; he wanted to go to number 7.

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I finally demanded to see a doctor and they sent one from the floor not the O.R. I asked about the feeding tube and
why isnt IR placing it or scheduling it to be done? They stated no and said that your nurse from the floor will place
it. I had issues with this and said this hasnt worked in the past because he was hard to get the feeding tube in
properly.

We decided that it needed to get done so they give Kolton a sedative and he started getting sleepy. They took him
back and we went to the 3rd floor waiting room for the 1 millionth time. We waited the 1 to 2 hours that was
supposed to take but it went longer so we knew that something took longer than expected. They called us back to
discuss that the PIC line went ok but the feeding tube was attempted 4 times by the floor nurse and on the 4th try
the water came out his nose and mouth causing him to stop breathing and he coded. They did CPR for several
minutes and got him back. Hes in recovery and that we can see him in a few minutes.

Once in recovery the general anesthesiologist stated she gave several minutes of chest compressions. I then asked if
she knew Koltons current cardiac surgeries and that he had a recent Fontan, which she acknowledged. I then asked
if she knew he also had within the same surgery a valve repair which there wasnt an acknowledgement. I also
questioned why there wasnt a single Cardiac doctor or Cardiac anesthesiologist present due to the complex
concerns with Koltons heart. They stated due to the simple procedures being performed is wasnt necessary. I then
replied that it seemed not to be a simple procedure for a cardiac child and there were already documented concerns
with Kolton and feeding tubes. Around six to eight failed feeding tubes to be exact.

After returning back to the 5th floor PICU Kolton was placed on more medications and VaporTherm (Oxygen - High
Flow Nasal Cannula support for patients in respiratory distress) to help dry out his lungs and nasal passages.
Throughout the rest of the night Kolton was stable and resting.

The next morning Dr. Murphy was making rounds and Kolton was awake and in good spirits. Dr. Murphy stated that
Dr. Christian still wanted Kolton to have a feeding tube and get better nutrition. I asked her how this was going to be
completed since it failed greatly downstairs. She stated that we would do this here on the floor. I stated by who?
She said your nurse. I stated, With no disrespect to our nurse and her ability to complete this task. I will not allow
anyone except a cardiac doctor or Interventional radiology (IR) that refused to do it in the first place. Dr. Murphy
then said due to Koltons coding yesterday that it is a very high risk for Kolton to undergo any anesthesia. The risk so
great he could code again or die. I then asked again, Whos going to put this feeding tube in? Dr. Murphy stated
she would do it herself. I said great and thank you very much.

Dr. Murphy had x-ray come up and standby to make sure she placed the feeding tube correctly. First attempt the
tube curls up in the stomach, 2nd attempt the tube curls back up his esophagus. 3rd attempt the tube forms almost
a figure 8 in his stomach, 4th and final attempt the tube almost creates a knot somehow twisting into itself. All four
failed attempts. Dr. Murphy looks at me and says, Im truly sorry I failed you, Kolton is a very hard case. I
explained to her thats what Ive told everyone from both the 7th floor and the 5th floor. So she leaves to discuss
this with Dr. Christian.

Dr. Murphy comes back and states that Kolton will need to go back down IR to place the tube. We are in total shock
at this point. I ask her that you just told us earlier that Kolton was too much of a risk to undergo anesthesia. This is
when things change and I knew that made a very big mistake the first O.R. attempt. Dr. Murphy says that this time
we will have an entire staff of cardiologist doctors and cardiac anesthesiologist there to make sure things go
smoothly. Our jaws just dropped and I wondered why this wasnt done in the first place. Dr. Murphy couldnt really
answer this because she wasnt the one that setup the other procedure.

This was the turning put in Koltons heart declining because he had an echocardiogram and his leak from his valve
that was acceptable was now considered more than moderate but less than critical. This all happened within the
first week and a half of October.
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The Official Ruling & News.
After all the tests, more echocardiograms, and more heart drugs now needed and introduced Dr. Christian met with
us to tell us the news. Kolton now has a failed Fontan and the leaking valve is more severe than before. Koltons only
hope is a heart transplant. Before that could happen doctors needed to perform a bunch of tests to make sure
Kolton was a candidate for a heart transplant. So the test begin. Kolton passes all the tests but two things are
waiting.

Dr. Christian meets with us again and she says I have some terrible news. Kolton has been denied being on the
transplant list, the reason for this his heart is much too complicated and the Senior Staff at Boston Childrens
Hospital Reviewed Koltons medical charts and stated if he was at their hospital he would be denied a transplant.
Our hearts sank further than they have ever been. She basically told us our son is just going to die. Its the end of the
road and just to wait his fate.

Dr. Christian said, dont give up hope Im still not going to stop Im going to do the best I can for your son. Im
working on some things so hang in there. What she was actually doing was researching her past twenty years of
files remembering a similar case and hoping based on that Kolton could get a transplant too.

Dr. Christian did find that similar case on a child with a heart of the right side (not as complicated as Koltons heart)
and contacted the family. She completed his surgery when he was 3-5 yrs. old and he is now 17 yrs. old and doing
well. She took this file to her team members and they all agreed that Kolton could go through a transplant surgery
with a very favorable outcome.

The transplant team then comes to see us and gave us the great news and said they were waiting on the approval
from the insurance company. A day later we were approved and Kolton was listed 1A critical and because he was a
blood type B he was at the top of that list when he was listed.
So through the month of October we had some small issues with Kolton but very minor and nothing to jeopardize
his transplant or being on the transplant list.

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ECMO The Double Edged Sword.
Near the beginning weeks of November Kolton started having issues with all the heart medications, blood thinner,
and antibiotics. So they would use Lasix or Bumex both are diuretics used to eliminate excess fluids in your body.
Kolton swelled up to a positive seven to nine liters of excess fluid and could not remove it that even his penis area
swelled severely. I tried telling the nursing staff for several days that something physical needs to be done, that
medications are not working that it is a physical problem.

They ordered a CT scan on Kolton and we took him down and the cardiac anesthesiologist went with us because
Kolton would have to be very still. They stated they would use a temporary intubation, different from a more
permanent one like on the PICU floor. I stepped out of the CT scan area and was told to go back to Koltons room
and wait. It should not be too long. As soon as I got to the room Dr. Maynard ran into the room and stated Kolton
had coded as they were putting the intubation tube in. He said it was less than 60 seconds and he his ok and stable.
While hes still in CT they are going to complete the CT scan which will take about 5 minutes and then bring Kolton
back up to me.

Kolton remained stable through the night but restless, he continued having issues with this fluid gain and swelling
up everywhere. It wasnt until I literally grabbed Dr. Maynard in the hallway and asked him to physically look at
Koltons penis area and the huge amount of swelling. He agreed and called specialist.

In the meantime he said they would try to insert a Foley catheter (sterile tube inserted into the bladder to drain
urine) but Kolton was in too much pain. So the Urologists showed up and used special numbing cream and inserted
the Foley catheter and immediately urine was flowing out of Kolton like a mini stream. You saw the look and relief
on his little face. It was so bad for the past two days that he was slightly choking, gaging, and could never get
comfortable. Kolton peed off almost 6-7 liters.

Koltons heart rate and blood pressures started to get higher and some of the medication were not working like
they should, this was Saturday night November 12th. I called my wife Mimi because she went home for the weekend
and told her she needed to get here ASAP. She started on her way earlier that Sunday morning around 3am-4am. My
mom had been with me this entire week as well.

As my wife arrived around November 13th Sunday around 7 to 7:30am Doctor Murphy said that due to his low
oxygen saturations, harder time breathing they were going to intubate Kolton. She also warned us that is he stops
breathing, like he has done in the past, while they are in the process of intubation, they will have to go straight to
ECMO (Extracorporeal Membrane Oxygenation) is a procedure that uses a machine to take over the work of the
heart and the lungs.

They asked us all to go have a seat in the family room and wait until they come and get us. No sooner we sit down
and Dr. Murphy is there stating, Kolton stopped breathing and coded, Dr. Mettler is going straight to ECMO. Our
hearts sank to the floor and we started crying. He was supposed to be just intubated for a few days and then back to
the normal talking funny boy Kolton. Once they had finished and allowed us to come back and see Kolton we were in
shock. We had never seen the ECMO system like this. Only passing other patients rooms and not really seeing it or
understanding it.
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The photograph below is the first photo I took as we entered the room around noon on Sunday and to the right
behind the IVs is the ECMO machine and the hoses on the right near his head are called cannulas that supply the
blood and remove the blood to his body.

We continued with no concerns for the next few weeks and Kolton was able to be awake and look around but
because he was on a ventilator he could not speak. Nov 13th 2016 was the last time he spoke to us the last time we
heard his voice. Despite these major setbacks he was in good spirits and still never seemed to complain or shed a
tear.

Wed asked him all the time if his ok, feeling ok, or anything hurting. Hed shake his head no. The month seemed to
be going well until it was time for his first ECMO machine change. (The reason for this is the blood in the system
sometimes loses its oxygen levels and they have to keep turning up the levels to assist Kolton and blood clots in the
oxygenator as well)

Once they changed the machine everything seemed to be fine. It wasnt until a few hours later we started noticing
that Kolton wasnt acting himself. He stopped responding to questions instead he would stare off and not focus. His
eyes would fixate to the left and it took raising your voice to get him to look at you. He also seemed to have
problems with his right arm and leg both were not moving, but his left side was fine.

The team rushed him down for a CT scan where they found that he had a bleed in the brain. They called in the
neurosurgeon and he explained that if this bleed doesnt stop they may have to open up the top of Koltons skull to
relief the pressure. They also said Kolton could be left with some sort of brain damage. There was also the chance
Kolton would need to be removed from ECMO and would have to survive on his own without life support to see if he
would heal from the brain surgery or no surgery and from the brain bleed itself.

For two weeks we waited for signs of continued brain bleed. As everyone celebrated Thanksgiving we prayed for
Kolton and eventually he started coming around his eyes started focusing and looking around like normal.

He had slight movement in his right arm and leg, very very small but an improvement. Doctors ordered another CT
scan and it showed not a single new bleed and there was great reduction in the current areas of the brain that had
the bleed.

Kolton was improving from the last week in November and continued to improve all through the month of
December. They ordered physical and occupational therapy every week. Koltons right arm and leg came back to
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almost full range of movement. Since Kolton had been bedridden he had lost a bit of muscle tone throughout his
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body so range of motion for everything was not that good, but the therapy was helping greatly.
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Facebook Koltons Page
During Koltons stay from August 2016 until mid-November I used to text and update most of our family and friends
on my personal Facebook page. It wasnt until one of the moms of a CHD child contacted me through some other
parents that were on the same 5th floor PICU named Karin Grindall. She stated I should make a page for Kolton
where everyone could view his updates. I told her I didnt have that kind of time, so she said shed make it for me
and make me the admin person.

This is the page you all have seen through his journey and to this date. This paged ended up trending to the point
that a Boston Police Officer named Kevin Welsh saw this page and decided he needed to do something so he
contacted me and asked what he could do. I explained to Kevin that Kolton had been waiting on a donor heart since
October and its now into the month of December and we have not had a call for a donor heart.

Kolton has had several near death experiences and I felt his time was limited. I told Kevin we need to go public with
Koltons struggle and need for a donor heart to be directly donated instead of waiting on a phone call from the
organ transplant organization. So Kevin reached out to law enforcement, the Fraternal Order of Police, and his
friend Laura Clarizio who is a Publicist/Childrens Book Author/television reporter, producer and news anchor.

Laura called several news media outlets and got a local news channel to do a story on Kolton. News Channel 4
Nashville Reporter Forrest Sanders. From that story it went viral and so did his Facebook page. We started getting
news channels from everywhere as far as Boston and even nationwide to cover Koltons story. We also started
getting law enforcement from everywhere visiting Kolton and mailing him patches and police gear from all over the
country. (Even after he passed away we are still getting more stuff sent to us for Kolton) We had several Law
Enforcement Department take special interest in Kolton Vanderbilt PD, Hendersonville PD, and many others made
him an Honorary Officer with their departments.

Koltons love for law enforcement started at a very early age and almost every game we have on iPads and tablets
were police games. His Halloween costume was SWAT and he had a battery operated police car he drove around the
outside the house.

January The Final Month.

Kolton continued to improve and do well on ECMO through many ECMO circuit changes, he was on the 7th circuit
change at the beginning of January, and mostly because he had the brain bleed earlier they had to run the machine
with lower doses of heparin (blood thinner) which allowed more blood clots to develop in the circuits. Kolton
continued physical therapy and the team introduce the Tumble chair which he didnt want to use at first but once we
got him in it, he loved it. He could sit higher in the bed and look all around for the first time in a long time. He had a
different view of everything and that brought some happiness to him.

Kolton was still receiving police stuff from everywhere and getting visitors all the time. On January 13th which was a
Friday they decided to change the ECMO circuit again (number 8) and Kolton had no issues and was doing fine and
was awake and watching cartoon movies with daddy.

Saturday January 14th Kolton was having a normal day and evening. It wasnt until around 3:30am while he was
sleeping that he woke up and seemed to act like something was wrong. A few numbers changed on his vitals on the
screen and his oxygen saturations were dropping. The nurse called for Dr. Murphy, she looked at him and knew
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something wasnt right. They got an x-ray and noticed some bleeding inside his lung or lung cavity. They called in Dr.
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Mettler and the next thing I knew is I was asked to wait outside.

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Dr. Mettler called me on my cellphone and asked where I was. I told him outside the PICU. He said hed meet me
there. Once he got there he said, You need to come with me. Your son has a major bleed inside and we are not sure
where it is at but hes bleeding as fast as we can replace it. I had to place a chest tube on the right side to drain the
blood.

Dr. Mettler said he thinks Kolton may have a tear in the heart or one of the ECMO cannulas punctured his aorta in
the heart. He doesnt think Kolton will make it to the elevator to get to the 3rd floor O.R. or if he makes it to the 3rd
floor if he will last long enough to find the problem. I had already called my wife when this happened she was on her
way from Knoxville.

While I was in the room with him on the 5th floor PICU Kolton went through 19 units of blood and they had 2 or 3
coolers from the blood bank with blood in them to save our son outside the room. When they wheeled our son out
of the room and down the hallway it was the last time I thought I would see him alive. Dr. Mettler and Dr. Nicholson
on call Cardiac catheterization doctor told me they would do their best to bring Kolton back here but the odds are
very low.

This was about 7:30am to 8:00am Sunday morning January 15th. After hours of being down stairs we received a call
from Dr. Mettler, he stated The bleeding has slowed down a lot but they cannot find where it is coming from. He
went on to say the good news is it is not the heart or any of his arteries or veins but the bad news we dont know
where the bleeding is coming from. So Kolton returned from the 3rd floor and was in stable condition but had the
chest tube in and was still draining blood but not in a dangerous amounts. Kolton made it through the night and had
no major concerns or anymore major bleeds but his lungs did look that great due to all the fluid intake and blood
transfusions. He was very swollen that his head was almost doubled in size. So they inserted a Foley catheter to
drain the fluids and added Bumex IV drip.

Monday morning Dr. Christian our surgeon came to see Kolton and advised us that she wanted to put in another
chest tube to assist drainage and later in the day or tomorrow she needed to take him down and try to find and
repair the bleeding area. After placing the second chest tube Dr. Christian decided she needed to take him down
that day. Around 5:30pm they were getting Kolton to go down to 3rd floor O.R. Dr. Christian stating that if she finds
the bleed and tries to repair it and it starts bleeding like the night before might not be able to stop it and Kolton will
die in the O.R. (Dr. Christian never sugar coats anything, I respect her for that)

So from approximately 5:30pm until 8:45pm Kolton was in the O.R. and we and my mom are again in the O.R.
waiting room for the two millionth time (I really hate this room and floor). Once again we ended the only ones in
there with the staff shutting off lights and going home. Finally Dr. Christian comes out and says they found the bleed
and it was the back side of his right rib cage. She said it looks as if you fell on concrete and got a raspberry on your
knee and how it bleeds from little different areas. It doesnt seem much but when hundreds of areas are bleeding at
the same time it turns out to be significant. She stated she used a laser/heat gun to cauterize the areas but once she
thought she had repaired it but still some of the areas bled again. She then used some anti bleeding packing material
to place inside the area to stop the bleeding, she said explained the material dissolves on its own and will not harm
Kolton. Kolton then returned to 5th PICU stable and made it through the night with no concerns except his lungs still
didnt look great but they were working on that with the ventilator settings.
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Tuesday morning while making rounds Dr. Conrad came in to see Kolton and looked him over and she and the nurse
clamped off one of his chest tubes, noticed some of the settings on the ventilator and then removed the clamp. I
thought this was odd but they didnt seem concerned and didnt say anything to me. Later in the day Dr. Christian
and his staff showed up to tell us that Kolton has a hole in is right lung and this is serious, she said that during
yesterdays surgery she noticed a small hole and stitched it up. I was kind of ill at this point because there was never
any mention to us after his surgery by Dr. Christian or any staff member up to this point. They all apologized for this
but she said that when its so small she just repaired it while in repairing the bleed.

They were not sure if this is the same hole she repaired and reopened or another one that just opened. But this hole
has to close for Kolton to continue with any type of transplant. Also Koltons lungs must show an improvement in 48
hours or he will have to be removed from ECMO, which more than likely would end his life. The next day rolls by and
an x ray is taken; Kolton had improved greatly on his left lung his but still has a little hole in his right lung. Dr.
Christian made good on her promise since Kolton improved she lifted the 48 hour time limit. She also decided to give
Kolton a fighting chance and said that she needed to switch Koltons ECMO circuit so he has a fresh system to help
fight and get better (ECMO number 9). Kolton continues to stay in stable condition and has no concerns except the
lungs have slowed down so they decide to bring in a high frequency oscillatory ventilator (advantage of high
frequency oscillatory ventilation as compared to either conventional positive pressure or jet ventilation is its ability
to promote gas exchange while using tidal volumes that are less than dead space) The ability of HFOV to maintain
oxygenation and ventilation while using minimal tidal volumes minimizes barotrauma and thus reduce the morbidity
associated with ventilator management of RDS) to help heal his right lung. They also stated that if this does not
work there is not much more they can do for his lung.

The Last Days.

From Wednesday January 18th until Monday January 23rd Kolton was ok, he looked tired and worn out but hed still
answer he was ok by shaking his head yes. Doctors met with us on Monday and said that the lung has not healed and
that the right lung has worsened and that due to this he would have to be removed from the Transplant List until
there was improvement. The problem with this is if there is no longer a bridge to transplant then they no longer
keep you on ECMO which in this case Kolton will die. So after many tears and discussions with doctors they gave us
a few days to call family and friends to come and be with us. The doctors were going to turn off the ECMO on
Thursday morning. Tuesday January 24th Kolton is looking even more tired and worn out. My wife always asked
Kolton the last several days if he wanted to go to heaven and he would never answer that question. If you asked him
if he was hurting or feeling ok hed answer yes or no with a head shake one way or the other. Tuesday was a long
day and a very fast day all in one. Child Life services help us make hand and feet impressions. Along with Music
Therapy, which had a brand new tool that is similar to a stethoscope that can record a childs heartbeat. Kolton was
the first child to ever use this new tool.

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Wednesday morning comes and the staff had more bad news that Koltons breathing is getting worse and the ECMO
machine is being turned up on its oxygen levels to help assist Kolton in breathing. Kolton really looked worn-out. He
wasnt the same happy child; he looked like he fought long and hard for 6 months. How many times he stopped
breathing and coded and still came back fighting. Had a near fatal bleed a week ago that he wasnt even supposed
to make it back alive and he did. So the staff said that they dont think Kolton will make it through the day let alone
the night. My wife was hoping he could hold on one day longer because we had family in Canada trying to make
emergency plans to get to Vanderbilt. Most of my wifes family had made it and my mother and father were both
there. My wife asked Kolton again, around 12:30pm if he wanted to go to heaven and be with the angels and God..
There was a slight pause and Kolton shook his head yes ever so slightly. The entire room of family, nurses,
doctors, & ECMO staff all started to cry and shed tears. There was now a very unusually peace that came over Kolton
like he knew he was going to be ok. I think Kolton wanted his mom and dad to be ok with it and no he kept his
promise to fight. From the beginning we asked him to promise us he would always fight no matter what so he could
get a new heart and go home. I think he fought to that last minute of that day to show us he didnt quit. Once he
heard us repeat over and over again how much we love him and its ok know. He seemed to be at peace. He never
stopped hearing our voices saying how much we loved him until he took his last breathe and was gone forever..

Kolton passed away at 1:12pm central time Wednesday January 25th 2017.

Kolton was a fighter bar none. He made it through so many concerns, fevers, bacterial infections, long slow incision
healing, stopped breathing, and coded at least 6 to 7 times, that I know of, and came back to us, and had a near fatal
bleed that he wasnt even supposed to make in down to the O.R. yet to come back upstairs to the 5th floor PICU and
make it another week with chest tubes and a hole in his right lung. Yeah Kolton was a fighter no one could not say
he wasnt on any level.

To top off everything the Vanderbilt Police Department, Hendersonville PD, Davidson County Sheriffs Office, TN
Highway Troopers, Nashville Metro PD, Gallatin PD, Lebanon PD, Knox County Sheriffs, Knoxville PD, FBI, and many
other agencies gave our son a Police Escort all the way from Vanderbilt Childrens Hospital to our front door of our
home. Kolton has made such an impression on the Country, Law Enforcement, Peoples attitude towards law
enforcement, and changed peoples lifes forever.

I want to thank everyone that has followed Koltons journey and had only wished it turned out the other way with a
transplant and he story of recovery and being discharged with a new heart and new life. Unfortunately, that wasnt
the case. Thank you for taking the time to read Koltons Journey.
Below is the last photograph taken of Kolton before his passed away and one to remember Kolton as a happy non
complaining little boy.

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Fly High Kolton boy. No more pain or hospitals. We love you so much and forever.
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#KOLTONSTRONG
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