It's hard to believe, but our little Kennedy is almost 10 years old. On February 17th of this year she is...in her words..."going to hit double digits!" This upcoming birthday has gotten me to thinking about the past 10 years and the whirlwind that it has been. In a previous blog I discussed her diagnosis and some of her daily struggles, but I think it is worth taking some time to reflect on her entire life to this point.
Many people don't know this, but when Kennedy was just a couple months old, we almost lost her. What they called it at the hospital was "failure to thrive", but the doctor in Detroit pretty much flat out told us that without a proper diagnosis she may not have made it much longer. We knew she was not incredibly healthy in her first few weeks, but we had no idea it was as bad as it was. She wasn't growing hardly at all, she was super skinny, and couldn't hold anything down. I am convinced that we may have actually lost her if it weren't for Dr. Dev Nandamudi in Port Huron...he was the one that ordered up her blood work when he just thought something didn't seem right. After an extended process of elimination in Detroit, we heard the two words that would change our life...Cystic Fibrosis.
What exactly is Cystic Fibrosis? What does it do to the body? What is the outlook? What does it all mean? These were just a few of the questions that we immediately raised upon hearing the diagnosis, and for those of you that really don't know much about the disease, I'm going to try to give you the Cliff's Notes version of it now.
So what is CF? In a nutshell, CF is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States and 70,000 worldwide. A defective gene causes the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. This mucus also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. This is why Kennedy has to take her "zymes" every single time she eats any food with fat in it. Before her diagnosis, any time she dropped a deucer in her diaper, it was very greasy and liquidy. These greasy stools are one of the tell tale signs of CF because none of the fats from the foods eaten get properly digested and they just end up coming out the poop chute. Another interesting sign of CF is INCREDIBLY salty skin. Back in the olden days, doctors would literally lick the skin of babies that were failing to thrive to see if they could make a CF diagnosis. I can still remember busting Cheyenne on a couple of different occasions licking Kennedy when she was a baby. "But she tastes soooo good!" Creepy and funny all at the same time!
In addition to taking her enzymes, Kennedy also has to do a couple of hours of breathing treatments and chest therapy every day to help keep her lungs healthy. For the first year or two, her chest therapy consisted of laying little baby Kennedy on our laps and pounding on her chest, back, and sides for about a half hour or 45 minutes total. We did this after the breathing treatments to try to loosen the mucus in her lungs so she could cough it out. After the first couple years, we found out about a machine that would make our lives a lot easier, simply called "The Vest". It is a $15,000 machine that involves Kennedy putting on a vest with air pockets in it that are connected to the machine. When we turn the machine on, the vest fills with air and then starts to vibrate, which in turn simulates the pounding that we used to do. It's not a fun thing to do every day, but Kennedy has simply accepted it and understands that she has to do it in order to stay healthy and stay out of the hospital.
The next question that always comes up when people talk to us about CF is probably the toughest one. "What is the prognosis?" Fortunately, this question is much easier to answer now than it ever has been. As late as the 1950's, very few children who were diagnosed with Cystic Fibrosis even lived to attend elementary school. However, advances in medicine and treatment over the past several decades has caused the median age for CF survival to be pushed up into the mid-30's. Additionally, more than 45% of the current CF population in America is greater than 18 years old. More often than not, people with CF are diagnosed before age 2, but in some cases they may not find out until they are much older. One of the first things that the doctors told us in Detroit when we found out the news was that "CF is no longer a death sentence." It was good to hear, but also very scary at the same time.
So as she approaches her 10th birthday next month, it got me to thinking about what her life has been up to this point. Truly, she is generally a happy kid, but she has recently begun to realize that doing what she has to do is a serious pain in the ass. I read about people on Facebook that piss and moan about having colds, fevers, headaches, and hangnails, and it got me to figuring out some statistics on Little Miss Kennedy. These are ballpark figures, but they are pretty accturate, based on 10 years of living with CF. Here goes....
-During her life, she has done chest therapy for a total of 3650 hours. This is equivalent to over 152 full days of chest therapy.
-During her life, she has inhaled approximately 3285 vials of Pulmozyme (each vial costs close to $50 each....which means she has used approximately $164,000 worth of JUST that medicine).
-During her life, she has inhaled approximately 6000 vials of Hypertonic Saline.
-During her life, she has inhaled approximately 6000 vials of Albuterol and/or Xopenex.
-These breathing treatments listed above have taken approximately 5475 hours, which is equivalent to over 228 days of doing treatment.
-During her life, she has taken approximately 43,000 enzymes.
-In addition to the enzymes, she has taken approximately 60,000 other pills for a total of over 100,000 pills in 10 years.
-During her lifetime, she has been on oral antibiotics over 100 times, has had 5 or 6 surgeries, and has had 5 or 6 picc lines put in for IV antibiotics to be given at home. She has spent approximately 40-50 nights in the hospital and has missed hundreds of days of school.
-To my best very rough estimation, the total cost of Kennedy's medical expenses over the past 10 years has been well over $1,500,000....possibly even double that.
The statistics really go on and on, but I think these are the ones that are the most telling. Kennedy is the definition of a fighter. She spends every single day of her life fighting something that she can't completely control, and she does it with a smile on her face. She has certainly changed me as a person as well as many of the people she has been around during her lifetime.
As much as I understand how difficult it is to be Kennedy, I still consider us to be a very lucky family. Any time Kennedy spends several days in the hospital, we get to see first hand why it is that we ARE lucky. There are kids in that hospital that are in a daily battle for their lives that make doing breathing treatments look like luxury. In addition, even though Nolan has Cerebal Palsy, spending time at the hospital makes us realize how lucky we are to have him. It may take him several minutes to climb up a set of stairs, but there are kids at that hospital that are in wheelchairs they will never get out of.
Every day it seems as though people get stuck on focusing on all that is bad with their lives, but having the kids that we do has helped us to focus on the good. So the next time you have the flu...or a cold...or a headache...or a hangnail...keep in mind that it could always be worse.
Until next time....
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