Breakfast
Tuesday, September 10, 2013
Tonsillectomy & Adenoidectomy
Wolfsons Children's Hospital
Jacksonville, FL
August 2004
Almost 400,000 children have their tonsils and adenoids removed each year in the United States. In 2004, Kellisa would be included in that number. This would be Kellisa's 14th surgery. {Read More}
Relentless Defender
My
plan was to write a story about Kellisa's 14th surgery, but events at Kellisa's
school will bump that entry back a day or two. Kellisa is in an ESE classroom
and it can be "challenging" {Read More}
Bilateral VDRO and Removal
Jacksonville, FL
September 2003 - January 2005 - February
2006 - February 2011
Kellisa was a little beyond her 4th birthday when she had her 13th surgery. Heading into her first
surgery on her hips, Kellisa already had seven brain (including two for an
infected shunt), one heart, {Read More}
Gastrostomy Tube (G- Tube)
Jacksonville, FL
June 2003 - July 2003 - July 2011 - August
2011
Kellisa struggled with several issues that led
to the placement of her first G-tube. Kellisa was
having trouble drinking; liquids would just drool out of her mouth. Kellisa would get tired of chewing and couldn't process
chewy or tough foods, so it was hard to {Read More}
Laser Eye Surgery
Retinopathy of Prematurity
Chicago, IL
October 1999
All preterm babies are at risk for Retinopathy of Prematurity
(ROP), with low birth weights being a second high risk factor. Kellisa was both
and {Read More}
PDA Ligation
Kellisa's first surgery: Patent Ductus
Arteriosus Ligation
Chicago, IL
Kellisa was born with Patent
Ductus Arteriosus (PDA), a congenital disorder in the heart. PDA is common in
premature babies with an undeveloped heart and lungs. Left untreated, it could
eventually lead to {Read More}
113 Days in Pictures
16 Weeks and a Day
Neonatal Intensive Care Unit (NICU)
RUSH Presbyrterian- St. Luke's
Chicago, IL
May 23, 1999 to September 13, 1999
Below represents Kellisa's stay in the NICU at RUSH for 113 days {Read More}
Tuesday, August 27, 2013
113 Days in Pictures
16 Weeks and a Day
Neonatal Intensive Care Unit (NICU)
RUSH Presbyrterian- St. Luke's
Chicago, IL
May 23, 1999 to September 13, 1999
Below represents Kellisa's stay in the NICU at RUSH for 113 days. There are many stories to be written about these days and what we went through that are still etched in my memory as if it was yesterday, but those are for another time. This series of pictures tell a story of unbelievable determination and will to survive by Kellisa...our little Warrior!
The second picture (the first picture and story might be shared at a later date, but no promises) we ever took of Kellisa (5.24.99)
Kangaroo Therapy
Kangaroo Therapy
7.6.99
Bath Time (7.6.99)
Scar from PDA Ligation Surgery (7.7.99)
7.19.99
Kangaroo Therapy (7.25.99)
Surgical Dressings after 1st Shunt Insertion (8.2.99)
Kellisa saying "OK" with her Right Hand (8.2.99)
EEG to Check for Seizure Activity (8.6.99)
Stitches from Shunt Surgery (8.8.99)
Kellisa in an Open Bed w/Nasal Cannula (8.10.99)
This was a HUGE Milestone for Kellisa!
Kellisa wearing her First Outfit (Doll Clothes)
(8.15.13)
Another EEG (8.16.99)
8.18.99
8.18.99
With Mom and NO Tape on her Face
Sticking her Tongue Out (8.26.99)
Bath Time (8.28.99)
Bath Time (8.28.99)
Drying Off (8.28.99)
8.30.99
Kellisa's First Bottle Feeding (9.5.99)
Another HUGE Milestone!
Kellisa drank 37cc (9.5.99)
Mom Burping Kellisa (9.9.99)
9.12.99
We slept in these Chairs for 4 Months
Picture taken after our Last Night
(9.13.99)
Kellisa's Last Bed Space (9.13.99)
The moment the best doctors in Chicago never thought would happen, Kellisa was discharged on September 13, 1999.
Arrival at Home:
Asleep in her own bed for the first time:
Sunday, August 25, 2013
Nothing Special
Grand Island
August 2013
Page 2
Kellisa
has been through 36 U.S. airports and I can assure you that Detroit’s airport
is by far the most difficult to navigate through with a wheelchair and baggage.
We arrived on time and headed towards baggage claim to get our checked baggage
(which was quite a load since I had Kellisa’s Freedom Mobility Chair, travel
wheelchair, luggage and all of our backpacking gear). Next, we headed for the
rental car bus pick-up area. Leaving the baggage claim area, we struggled to
fit on an elevator to go up one floor. A huge thank you to the gentleman, who
had his own young family to navigate through the airport, for helping to hold
the elevator door open as we boarded even though there wouldn’t be enough room
for his family.
After the elevator ride, we made a few turns, walked
across a skywalk, made a couple more turns and rode another elevator down to
the same level we just left minutes before. Once we were back on ground level,
we made a slight turn, squeezed through sliding glass doors and proceeded to
the location of our rental car company’s bus pick-up area. We were probably
less than a hundred yards from the baggage claim area, but it’s not connected
and that’s why we had to take make so many turns and ride two elevators.
Our
bus pulls up and Kellisa bends over with excited anticipation. Kellisa loves
riding on a bus because it’s usually a bumpy, noisy ride. The bus that pulled
up in front of us had a wheelchair lift which only increases the excitement. Kellisa
did her usual curling her head between her knees as she giggled and struggled
not to hyperventilate.
The
bus driver was a friendly lady in her late 40’s to early 50’s that seemed
genuinely happy to be at her job. While she was lifting a row of seats to make
room for the wheelchair, she paid me the following compliments: “thank you for
restoring my faith in men and fathers, there’s still hope”. I didn’t ask for
details, but figured she had been burned at some point in her life.
The
bus driver went out of her way to drop us off as close as possible to our SUV
and helped with our small mountain of gear. As I thanked her and gave her a
tip, she again thanked me for making her day and she told me how “special”
Kellisa was. It made me feel good all the way around even though I always feel
awkward when people think I’m doing something special.
I
don’t do anything different for Kellisa because she can’t physically do things
herself. We do what she likes; it just looks different because I have to be her
arms, legs and back. Helping your daughter have fun is a father’s
responsibility, it’s nothing special. I guess it’s an unexpected sight to some.
It makes me sad and motivates me to spread Kellisa’s story that we never see
other disabled kids in the outdoors, but I’m sure there are many “able bodied”
kids that don’t get the chance either. We’d still be visiting Grand Island if
she was a physically functioning 14 year old who loved outdoor adventures.
With
the SUV loaded, I set the GPS to Ashland, OH and started our long drive.
Thursday, August 22, 2013
PDA Ligation
Kellisa's first surgery: Patent Ductus Arteriosus Ligation
Chicago, IL
Kellisa was born with
Patent Ductus Arteriosus (PDA), a congenital disorder in the heart. PDA is
common in premature babies with an undeveloped heart and lungs. Left untreated,
it could eventually lead to congestive heart failure.
In a healthy birth, the
ductus arteriosus closes shortly after birth, preventing irregular transmission
of blood between the aorta and the pulmonary artery. The PDA closes as the baby
breaths oxygen into the lungs which produces sufficient levels of brandykinin.
Hypoxic preemies take in too little oxygen preventing sufficient brandykinin to
be produced and the ductus arteriosus remains open (patent).
With a PDA, some of the
oxygenated blood from the left side of the heart flows back into the lungs from
the aorta to the pulmonary artery. This will lead to a shortness of breath and
the lungs fill with additional fluid creating an increase in lung pressure.
This increased pressure will make it difficult for the baby to inflate the
lungs.
Kellisa already had
underdeveloped lungs and was immediately placed on a respirator following her
birth. A PDA is considered congestive heart failure. A course of indomethacin,
a special form of ibuprofen, is the preferred method of treating a PDA in a
preemie. Kellisa had two courses of indomethacin without success.
The last option for
Kellisa was surgery. Cardiologists would go in through the Kellisa’s back to
her heart and surgically close the arteriosus. This would be Kellisa’s first
surgery. Kellisa was 3 ½ weeks old when she had the successful PDA ligation.
Little did we know at the time that this would be the first of many surgeries.
This is the first picture we have showing Kellisa's scar from her PDA surgery, about two weeks after the surgery.
Wednesday, August 21, 2013
Shunt Surgery
Christmas 2005- 9 days after her 10th shunt surgery
Rush Presbyterian- St. Lukes, Chicago, IL
September 1999 Shunt Replacement
Rush Presbyterian- St. Lukes, Chicago, IL
October 1999 Shunt Replacement
Rush Presbyterian- St. Lukes, Chicago, IL
May 2000 Shunt Replacement
Arnold Palmer Hospital, Orlando, FL
May 2001 Shunt Malfunction
Arnold Palmer Hospital, Orlando, FL
April 2003 Removed Infected Shunt
Arnold Palmer Hospital, Orlando, FL
April 2003 Placed Programmable Shunt
Arnold Palmer Hospital, Orlando, FL
October 2005 Shunt Repair
Wolfson's Children's Hospital, Jacksonville, FL
November 2005 Shunt Repair
Wolfson's Children's Hospital, Jacksonville, FL
December 2005 Shunt Replacement- Non-programmable
Wolfson's Children's Hospital, Jacksonville, FL
Tuesday, August 20, 2013
Laser Eye Surgery
Retinopathy of Prematurity
Chicago, IL
October 1999
All
preterm babies are at risk for Retinopathy of Prematurity (ROP), with low birth
weights being a second high risk factor. Kellisa was both and was diagnosed with
ROP. The ophthalmologist was following Kellisa closely as her eyes developed.
Out
of everything Kellisa went through in her first six months of life, her eye exams
were by far the most brutal, both for her and her parents. Imagine 3-4 people
struggling to hold down a sickly baby less than five pounds as she fought with
everything she had as the doctor pried her eyes wide open as they bulged from
their sockets. A device straight from a medieval torture device museum was used
to lock the eyes in the open position. I still have nightmares of the banshee
wails that came from her oxygen starved, underdeveloped lungs and there was
nothing I could do but hold her down with all my strength.
Above: NOT Kellisa
My
fatherly instinct was telling me to push (hit) the doctor and run out of the
hospital with Kellisa every time she went through this exam. There’s only one
reason why I never committed an assault and escaped with Kellisa. When Kellisa
was first diagnosed with ROP, we were told that she would go blind if it
progressed unchecked.
The
blood vessels in the eyes finish growing in the last few weeks before a full
term birth. ROP is when the blood vessels grow in a disorganized way after a
premature birth. In rare instances, the ROP can resolve itself. As this
disorganized growth progresses, it will cause the retina to detach leading to
blindness by 6 months.
ROP
is defined with 5 stages. The first two stages do not lead to blindness. Stage
3 is when the blood vessels attempt to grow into an area without vessels. This
will cause a buildup of oxygen and blood leading to detaching the retina. Stage
4 is when the retina starts to detach. Stage 5 is total retinal detachment
which will cause substantial or total vision loss.
When
Kellisa’s left eye reached stage 3 and her right eye entered stage 4, we were
advised that laser surgery was the only choice for Kellisa. A laser is used to
burn the ends of the blood vessels to stop their attempt at growth. Before
Kellisa was 5 months old, we signed the parent consent forms for Kellisa’s 5th
surgery.
The
surgery was a success as it stopped the ROP. Because Kellisa’s blood vessels
never grew to the outer ends of her eyes, Kellisa doesn’t have any peripheral
vision.
Stevie
Wonder is probably the most famous person who suffers from ROP.
_____________________________________________________________
Eye Muscle Surgery
Jacksonville, FL
August 2002
Kellisa would have her second laser eye surgery to correct the
alignment of her eyes. Her eyes had become crossed. We tried to fix the problem
without surgery by patching her eyes; unfortunately this attempt did not work.
Without surgery, one of Kellisa’s eyes would become dominant and the other eye
would lose its ability to see as her brain would only use the best eye. The doctor would use the laser to adjust Kellisa's eye muscles so her eyes would be in alignment.
This
would be Kellisa’s 8th surgery and we don’t have any pictures to
share. However, two images are forever burned in my darkest nightmares. The
first is the blood tears that were flowing from Kellisa’s eyes when we first
entered her post-op room. The second and worst is the expression on her face.
She didn’t need to say a word; it was clear that she was asking her parents, “Why
and how could you do this to me?”
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