Sienna's Story
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Dear Friend:
This story is written on behalf of my precious 2 year old daughter Sienna.
Sienna is a preemie; born 3 months early. No one really knows why she came
early; I developed an infection at 28 weeks gestation. She spent the first 14
weeks of her life in the NICU at St. Joseph's Children's Hospital in Tampa
Florida. While in the hospital Sienna sustained an injury to her delicate airway
caused by the tube that was placed down her throat in order to keep her
breathing. Sienna pulled her tube out so many times, I lost count. She developed
scar tissue in her airway and had her first surgery at 3 months of age to excise
a granuloma that developed on one of her vocal cords. A week later she had a
second surgery, the anterior cricoid split, to relieve the swelling of the
airway caused by the first surgery. Shortly thereafter, Sienna left the NICU.
Two and a half years passed and Sienna's doctor continued to monitor the growth
in Sienna's airway. In this time frame, Sienna occasionally battled croup and
airway infections and ended up in the emergency room not being able to breathe on
several occasions. Sienna's airway was only a 2.5 mm. Clearly, Sienna's airway
was still too narrow to sustain a healthy life.
In late June 2005 her local doctor recommended that we consent to a laser
surgery to widen her airway. The first laser surgery was unsuccessful;
therefore, Sienna had a second laser surgery a week later and was able to leave
the intensive care unit a month after admission. I thought all was well and
believed that Sienna now had a 3.75 mm airway. Three weeks passed and Sienna
developed noisy breathing and chest retractions. Sienna went to the emergency
room and 4 days later under her doctor's recommendation was given a tracheotomy.
All my dreams were shattered! I went into deep depression. Sienna's doctor
informed us that our little girl would need reconstructive surgery to repair her
damaged airway. Unfortunately, Sienna's doctor does not have the necessary
expertise to reconstruct Sienna's airway. About one month later, I went for a
second opinion to another ENT who had experience with reconstructive surgery in
our local area. His scope determined that Sienna now has a grade III stenosis, a
web in the vocal cord area, and a granuloma on one of her vocal cords. How could
this laser surgery have gone so wrong! I had major guilt for having consented to
this surgery in the first place.
Sienna's case is a challenging one. After much research, we found that there is
a doctor in Cincinnati Ohio who is an international specialist in the
reconstruction of the pediatric airway. Dr. Robin Cotton performs 150 to 160 of
these types of surgeries a year. Dr. Cotton developed this surgery and has some
20 plus years of experience. I have heard that he is the airway king. Sienna's
local ENT has also recommended that Sienna go to Cincinnati and seek treatment
and evaluation by Dr. Robin Cotton. After much thought Sienna's dad and I
decided that we would make the trip to Cincinnati and seek treatment by the
best. The surgeries are far too difficult to entrust them to a surgeon who is
second best. We raised funds for our trip through a golf tournament and have
received many donations from our local community. I am pleased to say that we
are financially prepared for our first trip.
I have to admit that none of this has been easy. The only thing that keeps me
sane is the hope and the belief that this condition is only temporary. We are
scheduled to do a scope with Dr. Cotton in December 2005. I just hope that she
doesn't get sick around that time and have to reschedule. Please keep us in your
prayers and let's all continue to pray for all these children with this type of
condition. I do not know what tomorrow is going to bring, I just try to take it
day by day. Thank you Cindy for your website, it has helped me make it through
some very difficult days.
A trach tie friend,
Jenny Tyson
