May 2014 Shannon Miracles Newsletter

May 2014
Shannon Medical Center’s Newsletter
for Children’s Miracle Network®
Abby Galindo:
Standing Strong
page 3
Britani Rodriguez:
Looking on the Bright Side
page 4
Matthew Estrada:
The Definition
of Resilient
page 5
Put Your Money
Where the
Miracles Are.
Dear Friend,
The annual Children’s Miracle Network Celebration Telethon is just days away!
This is one of the highlights of our year when we get to celebrate some of the
heroes in our community who have used their “superpowers” to help change
the lives of countless children in the Concho Valley. Some have volunteered
and worked events, while others have dug deep and helped underwrite vital
equipment and training that helps the more than 16,000 children treated at
Shannon each year.
This year’s Telethon will broadcast live on May 31 from Noon to 10:30 pm on
KLST. Along with celebrating our partners, we will be highlighting our 2014
Miracle Kid Champions featured in this newsletter. These kids and their families
have all bravely faced and continue to fight difficult medical challenges. Some
have some very rare conditions. Through it all, these children and their families
are resilient – true, real-life Superheroes!
These stories all share one common thread – all received life-saving care at
Shannon Medical Center that was possible because of your support of CMN and
its mission to provide the best possible care to the children of the Concho Valley,
close to home. These stories also highlight that we still have critical needs to
fulfill. While most of the patients we see are generally healthy and happy, you
never know when your child or one you may know will need these services.
I, along with my colleagues, want to thank the Concho Valley for your continued
support so our patients may have these vital resources available in the hospital
and the clinic. Our patients are part of our family, and we want to provide the
very best for each and every member of our family.
Thank you in advance for your ongoing support as we partner together to make
Miracles happen every day in San Angelo and the Concho Valley. Be a hero, too,
and support the Children’s Miracle Network. Help make miracles continue for
the children of the Concho Valley!
Sincerely,
Doug Schultz, MD
Shannon Clinic Pediatrician
P.S. Please remember, every dollar raised in
our community stays in our community!
2
Join us for the
Children’s Miracle
Network Celebration
Telethon
Saturday, May 31 on KLSTTV (CBS), Noon to 10:30 pm
It’s just days away! The largest telethon event in the world will be
broadcast on May 31, 2014, when the Children’s Miracle Network airs from Noon
to 10:30 pm on KLST-TV. The goal of the Telethon is to raise funds to benefit the
children of the Concho Valley and to thank those sponsors who have raised money
for CMN during the past year.
Miracle Mom Delaine Fuchs and David Wagner from KLST-TV join Jay Michaels
(KIXY-FM Radio) to host this dynamic celebration. This year’s show will feature the
2014 Miracle Children and their stories, along with local donor check presentations
and information about the services provided by Shannon to children throughout
our region.
The key to a successful telethon, however, is YOU! Last year Shannon Medical Center
treated more than 16,000 pediatric patients. Our goal for caring for these young
people is to keep them in San Angelo for their treatments so they can continue
living their lives, close to their friends and family.
Help us put the kids first by pledging money for the many items on our Wish List.
For more details on these items, and to pledge your support, please contact our
office at (325) 481-6160 or email us at [email protected]. Thank you in
advance for your support. Without you, many of our Miracle Kids wouldn’t be a
part of our family.
Standing
Strong
200. The number of known cases
worldwide of Gorham’s Disease.
According to Abby Galindo, she’s
number 201.
With only 10 years of life experience under her belt, Abby is
the epitome of resilience. This brave little girl has conquered the
odds to bounce back from a disease so rare it only occupies one
paragraph in most medical school text books.
“Abby was complaining about back pains the whole week,” says
Laurie Galindo. “By the end of the week, she was in a lot of pain.
It was hard for her to move and get up so I made an appointment
with her pediatrician, Dr. Wagnon.
Abby describes the pain like carrying a backpack full of rocks.
“When I laid down it was hard to breathe so I had to get a bunch
of pillows to hold my head up when I was sleeping,” she says.
Dr. Michael Wagnon, Shannon Clinic pediatrician, often sees
children with back pain that usually resorts from a sports injury,
muscle strain or fall. Abby had fallen a few times, jumped in
the swimming pool in shallow water, slid down the slide and
fell— did normal kid things within a year’s time. But, Dr. Wagnon
ordered a chest and back x-ray to be thorough.
“Nothing showed up on the initial image readings,” he says.
“However, within the next several days Abby’s pain became
very severe and she began experiencing difficulty breathing. Her
mom took her to the urgent care clinic over the weekend and
another round of x-rays found vertebrae and rib abnormalities
and fluid on Abby’s lungs.”
After receiving this news, Laurie was told to pick Abby up from
school and take her to the emergency room. Immediately upon
arrival, tests began to determine the cause of Abby’s symptoms,
Dr. Wagnon assessed the results and talked to the doctors at
Cook Children’s Hospital. They performed thoracentesis three
separate times to drain the fluid off her lungs.
“We were in the hospital at Shannon for two days and on
September 6 they told me I needed to go home and pack a
bag and we needed to be at Cook’s as soon as possible,” Laurie
recalls. “And just like that, our world was turned upside down.
They flew Abby and I to Cook’s and she immediately had a rib
biopsy, spinal biopsy, bone marrow biopsy— they ran all kinds of
tests, lab work, blood work, etc. They checked for lupus, anything
cancerous, they were eliminating all these things, but we still
didn’t know what was going on. On the seventh day, they finally
diagnosed Abby with Gorham’s Disease.”
Gorham’s Disease, also known as Vanishing Bone Disease, is
a degenerative bone disease that causes the bones to become
extremely brittle, sometimes to the point of breakage. The
Galindos learned the disease had already affected Abby’s
vertebrae and ribs and it was possible the disease could spread
to other parts of her body. If left untreated her spine could
disintegrate, causing paralysis.
Abby’s doctors consulted with physicians
around the country who had dealt with
Gorham’s Disease. Luckily, they were
able to acquire the medicine she
needed and the family was able
to stay in Texas. To combat the
fluid in her lungs, Abby had a
port and bilateral chest tubes
placed. She was treated with
a chemotherapy drug and
special vitamins to help
increase the strength of
her bones and decrease
the fluid on her lungs.
“Before her diagnosis, Abby
was running around and
playing like a normal kid,”
her parents say. “When they
started her treatments, she
had to be flat on her back.
They had a brace made for
her. Besides all the pokes,
surgeries and medications,
getting used to the brace was
one of the hardest things. It
was so tight, we would put it on
and she would just cry. But, she
had to get used to the brace before
we could go home.”
Abby was in the hospital for three
months. Laurie stayed with
her the entire time and
Raymond traveled
back and forth
and Abby’s younger
sister, Raegan, and
brothers Dylan and Joseph, came to visit whenever possible.
“Seeing her in pain… it was hard on all of us,” Raymond says.
Abby’s brace starts underneath her arms and rests on her hips.
She must wear it every day for 10 to 12 hours to keep the
pressure off her spine or else it could snap. Abby laid in bed, on
her back, for six weeks before she was brave enough to sit up
and get out of bed into a wheelchair.
Laurie recalls. “The only time she takes it off is when she goes
to bed, but she has gotten used to it now.”
Last summer, Abby’s oncologist stopped her chemo treatments
because the fluid on her right lung was remaining steady. In
September, Abby will undergo another CT scan to reveal how
her spine is doing. Until then, she will continue to take daily
medication. Her daily medication regimen does not match her
youthfulness—vitamin supplements, calcium and her treatment
drugs, but her bones are looking better.
“She has come a long way and is doing so much better,” her
parents say. “She’s a happy girl for the most part and that’s
what amazes us about her. She can’t do everything other kids
can do. She gets upset sometimes, but she bounces right back.
We don’t know what’s going to happen in the future, but we
take it a day at a time and are enjoying every moment.”
Along with Dr. Wagnon, Abby is followed closely by a
neurosurgeon, endocrinologist, orthopedic surgeon, and
hematologist/oncologist. Abby still visits Cook Children’s
every three months, but is also able to stay in San Angelo
and receive treatment. She has CT scans every few months
and will undergo a bone density study once a year to
track the state of her bones.
“Knowing what Abby and our family went
through being away from each other,
it made all the difference in the world
for her to come home and receive
her chemo treatments at Shannon,”
Laurie says.
Abby’s Favorite Things:
Type of music: Hip Hop
Movie:
Because of Winn-Dixie
Food:
Lemon chicken
Inside Activity: Art
School Subject: Spelling
Vacation:
Camping
Hero:Grandma
Thing to Say: “I be silly”
Surgery is also a possibility after Abby stops growing. Rods would
be placed in her back to help stabilize the weak area of her spine.
“In regard to her future, since her condition is very rare, the
prognosis can be grim,” Dr. Wagnon says. “However, Abby is very
stable right now and continues to improve. She is a fighter and
has withstood tremendous amounts of pain and has continued to
move forward.”
The Galindo family has bounced back from a nightmare they
thought would never end. They are enjoying their creative, feisty
daughter and look to her for inspiration each day.
“When I think I’m tired, or have a headache, I stop myself and ask
why I’m complaining because it’s nothing compared to what she’s
been and is going through,” Laurie says. “We are in awe of her.”
As for her pesky back brace… Abby and her doctors have special
plans for it one day.
“We made plans to light it on fire,” she grins. “Or maybe we will
throw it off a building or let our dog chew it up.”
3
At age three, Britani Rodriguez
began having frequent, unexplainable bouts of swelling. The swelling
of her lips and face would render
her unrecognizable and cause her
to be in a constant state of tremendous pain.
As each birthday passed, Britani’s swelling episodes became
more frequent and progressively worse. They also spread to
other areas and began affecting her hands, intestines, and
in one scary instance, her throat.
“We would go to the ER once or twice a month depending
on the severity and frequency of the swelling,”
Raquel Biera, Britani’s mom, recalls. “She couldn’t
eat or drink anything because of her swollen lips.
She would throw up and lie on the bathroom floor
for hours on end in excruciating pain. We would
go to the ER when she reached her absolute
breaking point, where she just couldn’t take it
anymore, but there wasn’t a whole lot they could
do to help her because no one knew what was
going on. The episode where her throat was
swelling shut was the scariest time.”
The cause of the swelling was attributed to
allergic reactions. During the trips to the ER
Britani was given pain medications, but they
only helped her rest and did not fix the root of
her issues.
Britani’s pediatrician at Shannon, Dr. Fernando
Gonzalez, treated her for allergies and also referred
her to a pediatric gastroenterologist. She was placed on fiber
diets and had a capsule endoscopy to study her esophagus and
intestinal tract, but the swelling continued. She was also thought
to have irritable bowel syndrome and abdominal migraines. Dr.
Gonzalez got the family in touch with Dr. Stuart Abramson, an
allergist and immunologist who was coming to Shannon and had
seen and treated patients with Britani’s symptoms.
Raquel and her family were hopeful Dr. Abramson would help
them reach a conclusion and put Britani on the path to relief.
“Dr. Gonzalez is wonderful,” Raquel says. “He got us in touch
with Dr. Abramson. He and his nurse knew exactly what Britani
was going through. After an extremely long journey, we finally
received a correct diagnosis.”
In March of 2012, Britani was diagnosed with a rare disorder
known as hereditary angioedema. This disorder is triggered by
a missing or deficient protein in genetic makeup. Although it
is called hereditary angioedema, there is rarely family history
present. Instead, it is linked to a spontaneous genetic mutation.
“The swelling is referred to as angioedema because it occurs deeper
within the skin,” Dr. Abramson says. “It differs from an allergic
reaction, or superficial swelling, which creates hives. The episodic
swelling can be caused by a number of things including infection
and trauma, such as bumping an arm or leg or undergoing any sort
of stress. This is also not a sudden swelling like you see in a typical
allergic reaction, or anaphylaxis, it happens gradually.”
4
Looking on the
Bright Side
Britani’s Favorite Things:
Music:
Movie:
Food:
Candy:
Activities:
Super hero:
Thing to say:
“Hereditary angioedema can be
life-threatening,”
Dr. Gonzalez adds.
“It is frightening for the
child and their family. Britani’s case is very severe.
If the swelling continued in
her throat, she could have
stopped breathing.”
Fortunately, advancements have occurred in
the treatment of this
disease with the development of replacement protein therapy.
Britani’s type made her
an excellent candidate
for the therapy. She had
a port placed and receives IV infusions twice
a week.
Tiffaney Shaffer, RN,
Shannon Pediatrics
Unit Manager, sees
Britani twice a
week
when
she visits the
Outpatient Chemotherapy
Clinic. She describes Britani as a typical teenage girl and loves that
she always brings a smile and laughter with her to the treatments.
“She gets to do most everything a normal teenager does, but
she has to stop all of it to come to the hospital twice a week
to receive her infusion,” Tiffaney says. “Her treatments last one
to one and a half hours and she has to get stuck at least once
each treatment. She hates needles, but she does great. It’s been
wonderful to see her improve.”
Raquel has also noticed a huge change in her daughter and
credits the treatment for allowing her to see her daughter’s
beautiful smile more often.
Pop, Rap, & Mexican
Selena
Chili Cheese Fries
Almond Joy
Orchestra, ROTC
Spiderman
“Just saying”
“The medicine is a miracle, she says. “It’s so nice to see your
child no longer in pain. She doesn’t have to wake up scared or
go to sleep scared anymore. She doesn’t have to miss things
anymore— parties, trips, school due to the swelling. And, being
able to stay home and receive treatment, that’s incredible. We
would have to move if we couldn’t stay at Shannon and in our
hometown. She was raised here and we have a big family here.”
The preventative treatment has made a huge difference in
Britani’s quality of life. Her episodes were frequent and caused
constant pain. Dr. Abramson’s goal was to get her back to
enjoying regular teenage life.
“There is a normal range for the protein and hers was less than
50 percent of the normal range, which is when symptoms start
to occur,” Dr. Abramson says. “The goal is to keep her around 70
percent and above without the attacks. She hasn’t had an ER visit
since the therapy began.”
Unfortunately, hereditary angioedema is a condition that
requires lifelong treatment. Britani’s medical team is especially
grateful for the resources available locally so Britani and her
family can stay home for treatment.
“The availability of a pediatric allergist has been extremely
helpful,” Dr. Gonzalez says. “Dr. Abramson initiated the infusion
treatments and Britani had her port surgery here. The fact that
we have been able to prevent the attacks and that Britani has
responded to the treatment and we’ve been able to keep her
healthy over a long period of time is a miracle. She has taken the
entire situation very well. Her mom has been very supportive and
outstanding throughout the entire process.”
“I can’t imagine them having to travel out of town twice a week
to get treatments, it just wouldn’t be possible,” Tiffaney adds.
“Thankfully, with the help of Children’s Miracle Network, we can
offer her treatment here and it only takes an hour and a half
compared to a full day with travel.”
Britani has been through more than anyone could imagine. She
has a simple response for those who ask her about her condition.
“Everyone always asks me why I’m so happy even when all this
bad stuff happens to me,” she says. “I just always try to look on
the bright side.”
The Definition of
Resilient
Most families spend Christmas Eve
together in the warmth of their own
homes, not the surgery waiting
room.
On December 24, 2012, Daphne and Martin Estrada found
themselves in a waiting room, instead of their living room,
anxiously awaiting the results of their youngest son’s brain
surgery.
Matthew Estrada was born July 3, 2010. After an uneventful
delivery, the happy family took him home July 4.
As he continued to grow, Matthew hit all the normal,
healthy child milestones— he started walking and
talking at the right time, he loved playing with his
brothers and climbing on everything. But, Matthew’s
weight was not increasing along with his abilities.
Matthew’s
Favorite Things:
Food:
Snack:
Dessert:
Candy:
Spaghetti
Cheetos, chips
Popsicles
M&M’s
“After a year, year and a half, he just wasn’t gaining any
weight,” says Daphne. “His brothers had always been healthy,
chubby little babies and he wasn’t that way.”
After his second birthday, his weight started to decline drastically.
He would wake up vomiting and began to look malnourished.
“Daphne was concerned because he didn’t want to eat,” says
Dr. Stephen Sawyer, Matthew’s pediatrician at Shannon. “At that
point, we decided to increase his calories and have him come back
in another month. At that checkup, he still had not gained any
more weight. In September 2012, we ordered a full lab evaluation
for what we call ‘Failure to Thrive.’ Basic blood work, electrolyte
panels, thyroid tests, Epstein-Barr virus test, sweat test for cystic
fibrosis… and everything came back normal. We went further and
referred Matthew to a pediatric gastrointestinal specialist who
checked for Celiac disease, but came to the same conclusion.”
On December 17, Matthew was admitted to the hospital. At that
point, he had lost three pounds when a child his age should have
gained five or six.
“We did a CT scan of his abdomen
and pelvis and a swallow study, but
everything came back normal,” Dr.
Sawyer says. “His GI doc thought he
had a malabsorption syndrome or a
physical obstruction that was leading
to the weight loss since we couldn’t
get him to gain weight, not even
in the hospital. This doesn’t
happen very often. At that
time, we made the decision
to transfer him to a special
facility.”
Matthew was transferred to Dell Children’s in
Austin December 19.
“Dr. Sawyer had done
such a thorough workup
at home, the doctors
in Austin knew what
it wasn’t and started
other tests. Within 24
hours we had the news.
They showed us the MRI and
what had been the problem all
along— Matthew had a brain
tumor.”
A preliminary biopsy discovered
Matthew’s tumor, a suprasellar
pilomyxoid astrocytoma (PMA),
was located in the mid-brain
area. It started over the optic
nerve and crawled over
the hypothalamus into the
pituitary. It sits in the center
part of the brain, which
makes it less accessible
and more difficult to operate
on than something on the outside of the brain.
“Matthew had normal neurological exams the entire time he
was sick, but the location of the tumor was the reason for his
symptoms,” explains Dr. Sawyer. “It was located right behind
his eyes in an area that didn’t affect his motor cortex or his
coordination. As it grew, it reached a part of the brain that made
him not want to eat and it applied pressure on the brain that
triggered the vomiting.”
“Once the surgeons knew what they were dealing with, they
presented the options which were limited, especially because of
Matthew’s age,” Daphne says. “Because of the location of the
tumor, they could not remove it all. They recommended de-bulking
it, removing as much as they could.”
At 6:30 a.m. on Christmas Eve Matthew went into surgery. During
the 10-hour procedure, the surgeons were able to remove the core
of the tumor and place a shunt in Matthew’s brain to help drain
fluid and decrease pressure. However, Matthew suffered a stroke,
one of the risks associated with the surgery.
“Children are so resilient,” Martin said. “Matthew’s middle
cerebral artery was affected during the stroke which caused
hemiparesis, paralysis of the right side, but the doctors were
also very reassuring after the surgery and told us not to
worry about the function Matthew had lost. They told us he
would regain it.”
The surgery allowed for Matthew’s brain to start healing and
for the swelling/hydrocephalus that had been present for
so long to go down. The family thought the starting line to
the journey of recovery was in sight. But, an infection from
the shunt set back the healing process more. After they got
over that hurdle, Matthew had a feeding tube and a port for
chemotherapy placed.
After more than 50 days at Dell Children’s, Matthew was
transferred to Cook Children’s where he received his first
three chemotherapy treatments. Thankfully, he was able
to carry out the rest of his treatment at the Outpatient
Chemotherapy Clinic at Shannon. He finished his chemo
therapy in December and the treatment worked really well.
His tumor has started to shrink. The tumor did metastasize to
the base of his brain and down the lower spinal cord. These
lesions are also stable.
Tiffaney Shaffer, RN, Shannon Pediatrics Unit Manager,
worked with Matthew and his family throughout the course
of his treatment.
“We witnessed Matthew completely change over the course of
his treatment. He relearned all of his motor skills, started to
talk again, ran down the halls, he transformed into a regular
toddler again. It’s amazing to see the resilience kids have. He
was smiling, talking, playing and we were able to see all of it
happen here at Shannon.” Tiffaney says.
Matthew has bounced back from all of his setbacks and
is enjoying life as much as any four year old little boy
can. He has physical, speech and occupational therapy
appointments several times a week to help him continue to
recover functionality. He also has some vision complications
and sustained some hearing loss. His family thanks their
incredible support system of family members, coworkers and
hospital staff.
“I never would have thought we would have to utilize
Children’s Miracle Network,” Daphne says. “But, looking
back our pediatric oncology nurses received training through
CMN and IV and special syringe pumps, any toys or special
equipment to help take care of our local kids, are provided
by CMN funds. Not having to travel anymore was just so nice
for our family. It took away a huge burden. Matthew could be
in his own home with us. Children’s Miracle Network doesn’t
just help one person, it helps the whole community.”
The research on Matthew’s type of tumor is only a decade old.
His doctors will continue to monitor the tumor to make sure it
does not grow again. They suspect Matthew was born with the
tumor and as he began to grow, it grew with him.
“He is still at risk, but we’ve made it this far and we will
see where we go next,” his parents say. “We just try to keep
positive. Every day with him has been a miracle, from the
time they diagnosed him. It is a parent’s nightmare to get
that type of news, but to have him another day and see how
much he has progressed, that
makes him a miracle.”
5
A Little Fighter
The youngest of three, Caleb
Loehman, came as a bit of a
surprise to his parents Angela and
Michael.
Angela and Michael Loehman were just settling in to life with two
children when they found out they were expecting again.
“Caleb was total surprise,” Angela and Michael say. “Our second
child was only six months old and we were still getting used to
having two kids when we found out we were expecting. We were
happy, but really surprised to find out we were going to have
a third child. My pregnancy was great and I didn’t have any
complications.”
Angela was scheduled to deliver Caleb by induction on October 4,
2013, but Caleb had other plans. She went into labor September
16 while at work. She was rushed to the hospital and Caleb was
born at five pounds, nine ounces.
“He was doing well and everything was great,” Angela recalls.
“On the first day, he was spitting up a lot of amniotic fluid. This
concerned us, but the medical staff just said he had a lot of fluid
in his stomach and they weren’t concerned because it’s normal
for babies to spit up. As the day went on, he kept doing it over
and over and he wouldn’t keep anything down when I was
feeding him.”
Caleb’s Favorite Things:
Food:Carrots
Song:
Music from Frozen
Inside activity: Play in his excersaucer
Outside activity: Watch big brother and sister
play on the swing set
Makes him laugh:Peek a boo or being tickled
Favorite hero:
Mommy
Caleb’s first night home was a
rough one for him and his parents.
Angela was feeding him every two
hours, but Caleb refused to keep anything down. The next day at
his pediatric checkup, Dr. Doug Schultz became concerned when
he noticed Caleb had lost a considerable amount of weight. He
readmitted Caleb to the hospital and immediately started tests
that revealed a blockage.
“Milk could go in his stomach, but it was blocked from entering
his intestines,” Dr. Schultz says. “His stomach was getting bigger
and bigger, and it became so large it eventually filled up his
abdomen. Caleb was in the NICU and thankfully we were able
6
to bring equipment to the unit
to study his intestines,
isolate the blockage
and identify that
Caleb had duodenal
atresia. Because he
was born with the
blockage, he could
not survive unless it
was fixed.”
Once the blockage was
found, Caleb was flown to
Cook Children’s Hospital
for emergency surgery.
Dr. Schultz describes the
procedure like fixing a
plumbing issue— surgeons remove
the section housing the blockage and repair
the intestines.
“It’s a delicate surgery,” he adds. “It’s considered one of the true
pediatric emergency surgical conditions there are because the
patient will die if the blockage is not fixed. I’ve only seen it one
other time in 30 years of practice. It’s hard to identify because
they spit up their milk, but a lot of babies do that.”
Having no problems with the first two children, the Loehmans
were unsure what to do or think.
“I was terrified I was going to lose him,” Angela says. “I just
couldn’t fathom the idea of losing my baby.”
Caleb was in the hospital for three weeks following the
procedure. He was placed on an IV for the first week and a pic
line for the duration of the stay. A feeding tube bypassed the
surgery site and dripped one milliliter of fluid an hour into his
stomach. A separate tube was inserted to drain the fluid from
his stomach. It was a slow process, but he recovered well from
the surgery and Angela was able to start bottle feeding him on
a normal schedule.
“Just seeing him not being able to keep food down was scary,”
Michael says. “He was so young and little. But, we were happy
with the results of the surgery. I never would have thought they
could operate on someone that tiny.”
“I missed that bonding time with him since I wasn’t able to feed
him,” Angela says. “I could hold him, but there were wires all over
him. I couldn’t breastfeed him.”
At his one-month follow-up, everything looked great and the
surgeon said Caleb shouldn’t have any more problems with his
stomach. Caleb was progressing and the Loehmans rejoiced every
time they saw his weight increase. They joked about him never
missing a meal and said he was making up for lost time.
But, the week before Christmas, the Lohemans found themselves
in the all too familiar environment of the hospital. Caleb, now
three months old, and his older brother Ethan had contracted RSV
(Respiratory Syncytial Virus) from daycare. He was admitted to
the hospital the week before Christmas.
“It was more frustrating than anything— we
had gotten back on track, he was doing good and
gaining weight, I had gone back to work, and then we got
hit with him being sick again,” Angela recalls. “I had to miss
work, but luckily my boss really understood. We and our family
took turns watching him.”
Caleb required high-dose oxygen therapy with a VapoTherm
machine to help treat his RSV. High-pressure oxygen is blown
into the lungs to help recovery.
“If Children’s Miracle Network had not provided the
VapoTherm, Caleb may not have been able to receive treatment
for his RSV at Shannon,” Dr. Schultz says. “He was getting to
the point where he was having trouble breathing on his own.
The VapoTherm allowed him to get enough oxygen and start
fighting off the infection. The other option is the ventilator
which requires intubation and the machine breathes for you.
This would have been a lot more serious and dangerous for
Caleb.”
Since his bout with RSV, Caleb has experienced wheezing. This
prompted Dr. Schultz to order another screening for cystic
fibrosis. He had one screening as a newborn and another
during his time at Cook Children’s that came back inconclusive.
The sweat testing method is a non-invasive test that measures
the chloride levels in a sample of sweat. Higher chloride levels
are usually associated with cystic fibrosis. The testing machine
was provided to Shannon by Children’s Miracle Network.
Caleb is back on track again and is a glowing, healthy baby
boy. His parents credit Dr. Schultz for his thoroughness,
timeliness and concern when it came to their son’s health. They
are also grateful to all of the nursing and medical staff that
took care of them during Caleb’s time in the hospital.
“It’s scary enough to have a sick child, and it makes it worse
when you have to go out of town,” Angela says. “So, it’s
really nice the Children’s Miracle Network is able to provide
equipment that helps not only treat children, but it allows them
to stay home. If the sweat test machine would not have been
available here, we would have had to travel out of town for
an hour-and-a-half procedure. That entails taking off of work,
figuring out what to do with our other kids, spending money
on gas, etc. It’s just so nice to have those capabilities in your
hometown.”
The Sweetest Survivor
On January 3, 2012, Annistin and
Austin Franke made their debut into
this world six weeks early. After a
stay in the NICU, they were on their
way to being happy, healthy babies.
“They were doing great, growing how they were supposed to, eating
every three hours,” Amber and Blake Franke recall. “We were just
getting used to being home with them when Anni got sick.”
At the twins’ one-month checkup with Dr. Stephen Sawyer, Shannon
Clinic pediatrician, Anni exhibited some cold-like symptoms. She
tested negative for RSV and Dr. Sawyer instructed Amber to bring
her daughter back to the clinic in a few days if she had any fever
or still wasn’t feeling well.
By the end of the weekend, Anni’s condition took a turn for the
worst.
“I wasn’t feeling well, so I didn’t fully recognize she wasn’t
feeling quite right,” Amber says. “I actually had a seizure myself
that night and was admitted to the hospital. My sister-in-law and
mother-in-law were taking care of Anni when she began projectile
vomiting and not wanting to eat. My sister-in-law took her back to
the doctor.”
When the nurses saw Anni, they recognized how sick she was and
notified Dr. Sawyer immediately.
“She was probably the sickest baby I have ever seen in my office,”
Dr. Sawyer recalls. “She was lying on the exam table, arms out to
the side, whining and grimacing in pain.”
On February 6, Anni was admitted to the hospital. Blood work
revealed her white blood cell count was extremely high. The results
of a spinal tap showed bacteria called streptococcus pneumonia,
which is the most common cause of bacterial meningitis in kids.
“We all have bacteria in our system—in our nose or on our body—
but with Anni being premature, her risk factors for developing an
infection were greater,” Dr. Sawyer says. “It overwhelmed her
body. This disease is preventable through immunizations, but
because Anni was so young, so had not received the vaccine yet.”
Anni was placed on high doses of antibiotics to combat the bacteria.
During this time, Amber was still in the hospital trying to recover.
“Dr. Sawyer immediately starting Anni on antibiotics really helped
her,” Blake says. “It helped her start fighting back. I didn’t really
tell Amber how sick Anni was because I didn’t want her to get
worse. I would go check on Amber and make sure she was doing
fine and then I would go check on Anni and make sure she was
ok. Then, I would have to choose which one of them to stay with at
night. It was stressful, it was tiring, I was still working. Luckily, we
had help from family.”
The Frankes knew Anni was going to be in the hospital for some
time after the meningitis diagnosis was determined. A few days
into her stay, Anni had several seizures. Results of an MRI revealed
abscesses on her brain. Upon receiving this news, Dr. Sawyer
informed the Frankes they needed to take Anni to Cook Children’s
Hospital that evening.
“This illness is 100 percent fatal if it is not treated with antibiotics,”
Dr. Sawyer says. “It’s the most serious bacterial infection found in
infants. Luckily, her other siblings were not affected.”
Anni spent the next seven weeks at Cook Children’s. During
that time she had a weekly MRI and consults with multiple
specialists including a pediatric neurologist and a neurosurgeon
because they thought she may need brain surgery to deal with
the abscesses. Meningitis can affect motor development so a
physical therapist examined Anni. She saw an otolaryngologist
for hearing exams. Three hearing tests revealed high frequency
hearing loss in her left ear. She also received a central line to
receive her medication and tubes were placed in her ears.
Amber was with her daughter the entire length of her stay. Blake
would bring Austin, and their older daughter, Kennedee, to visit
on the weekends and whenever he could.
“I didn’t get to see my babies at home or love on them and
then I felt horrible for missing them because I knew I needed
to be there with Anni taking care of her. And, all the pictures
in the world don’t do it justice. Besides Anni, getting to see
her siblings on the weekend is mainly what kept me going.”
By the end of March, Anni and Amber were able to come
home. Anni still had her central line in place and was on seizure
medications. A home health nurse visited Anni once a week to
check her blood and administer her medications. The family still
made trips to Cook’s every two weeks and saw Dr. Sawyer the
weeks in-between.
“We were very protective of her,” Amber remembers. “If she had
a cold we were at the doctor’s office.”
When treated, the type of meningitis Anni contracted still has
a high fatality rate of ten percent. Of the children treated,
fifty percent have some sort of long-term neurological issues—
seizures, mental retardation, motor problems, hearing loss.
Fortunately, Anni has not experienced any further seizure
activity. She was cleared from Cook Children’s in September
2012. She has a slight speech delay, due to her hearing loss, and
sees a speech therapist and hearing teacher. But, other than her
minor issues, she has caught back up to her brother.
“She is a miracle in my eyes,” Dr. Sawyer says, who is grateful
for the availability of equipment made possible by Children’s
Miracle Network and the partnership between CMN and
Cook Children’s which allowed Anni to be transported
quickly. “She could have passed away from this illness
and she came through with minimal problems.”
Amber and Blake are beyond appreciative for Dr.
Sawyer and are in awe of their now typical twoyear-old. They look to Philippians 4:13 and advise
parents facing hard situations not to lose faith.
“Dr. Sawyer and the nurses went above and beyond to
help take care of Anni, they were wonderful,” Amber says.
“He called and checked on her every day while we were
gone. Dr. Sawyer is a God-send, he saved her life.”
“Anni’s a little fighter,” Blake says. “She and her brother like to
compete with each other. They look up to their big sister and copy
everything she does. There’s not a day that goes by that they
don’t amaze us. To go through everything she has gone through
and still smile, she’s just incredible.”
Anni’s Favorite Things:
Movie:
Cinderella
Actor:
Mickey Mouse
Food:Chicken nuggets,
green beans, fries
Candy:
M&M’s
Inside Activity:Coloring, painting
with mom
Outside Activity: Playing in the dirt
7
Your
Children’s
Miracle Network
Hospital
Helping Local Kids
Shannon’s CMN Staff
Bryan Horner
CEO/Shannon Medical Center
Lyndy Stone
Director/Children’s Miracle Network
Hope Barron
Marketing Coordinator/Children’s Miracle Network
Sam Coyne
Coordinator/Children’s Miracle Network
Kori Knappe
Newsletter Editorial Content
Dana Keena
Newsletter Design
P u t You r M on e y Where the Mirac l es A re!
This year’s Wish List contains both larger and smaller items, each important to provide optimal care and comfort for the
children we treat. We hope that you can bless our community by helping us acquire each of the requests on this year’s Wish
List. Remember, no gift is too big or too small when you’re impacting the life of a special young person.
Buzzy Bee (for pain control)$75
Training for Type 1 Diabetes Management Program$2,000
Fetal Monitoring System$89,000
Child Life: iPad for child education & distraction$550
Preemie Car Seat$150
Pediatric Unit Playroom Remodel$4,000
Syringe Pump $3,500
Pediatric IV Arm Boards $900
Breastfeeding Education for Nurses $3,000
Finger Pulse Ox $425
C h ildren ’ s Mira cl e N e t wo r k D o n a t i o n Ca rd
To make a donation, please complete this form and send it in along with your donation to: Children’s Miracle Network,
P.O. Box 1879, San Angelo, TX 76902, or make an online donation at www.cmnsanangelo.org.
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acknowledgement card to:
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To honor additional friends and family, please mail a list
of names and addresses to the Children’s Miracle Network
office or fax it to (325) 657-5220.
Children’s
Miracle Network
Hospitals
Local Hospitals Helping Local Kids
P.O. Box 1879, San Angelo, Texas, 76902