PeekabooNWA

Living with Cystic Fibrosis

Posted on 31. Jan, 2010 by admin in Personal Stories

“We want to do a sweat test to rule out cystic fibrosis. I think the chances of him having it are slim to none but we still need to rule it out.” — That was the first time I heard that there was a chance that my son had a disease.

My son Reid is a seven-year-old boy that plays every sport he can, annoys his brother every chance he gets, and wants all the little boy things like an Xbox and a puppy. But most of all, he lights up every room he walks into. He is a happy, energetic little boy who is living with cystic fibrosis.

Reid was diagnosed with CF last August at the age of six. As a mother, I cannot even begin to explain the agony of knowing that your child has a horrible disease that you can’t make go away. Every cough, every deep wheeze, and every restless night is pure torture on the mind. There are many nights when I will go into Reid’s room and watch him sleep, just to make sure he’s breathing. There are days that I watch in amazement at how strong he is at such a young age. There are days when I re-live the first days of finding out that our world was about to change forever.

For six years, I had mentioned to every doctor that we went to that something just wasn’t right with my baby. He had terrible digestive issues. He would go to the bathroom 6-8 times a day. I honestly couldn’t keep a clean diaper on the kid! He also coughed and seemed to get colds all the time. For six years I would say, “This isn’t normal. Please, what is wrong with my child?” And for six years I heard the same thing; maybe a milk allergy, maybe asthma, maybe a wheat allergy, maybe you are over feeding him. I remember getting so discouraged thinking I was somehow making my son sick, but I did not give up — and one day, it paid off. The doctor listened to Reid’s symptoms and decided to send us to a GI at Little Rock. It is there where we told that they wanted to “just rule out CF.”

In order to rule out cystic fibrosis, a sweat test was ordered. This was a very non-invasive test that took us about 45 minutes to complete. I remember walking around while we waited and feeling pity for all the people we passed wearing their “parent” tags. A week later, all the tests came back positive that Reid had cystic fibrosis. Thus, our long journey down the road of living with CF began. I must say, I was a bit relieved that we finally had a reason why Reid had the problems he was having, although that relief was very short lived — I had never even heard the words cystic fibrosis, so I had no clue what we were in for.

We immediately went back to the Children’s Hospital in Little Rock where my husband and I were taken into a conference room with a slew of doctors. I remember feeling very anxious and not knowing what was really going on. The head doctor looked at me and said, “It is cystic fibrosis. Do you know much about CF?” I looked at my husband and then back at the doctor and said, “No, I wouldn’t let myself look it up on the internet because we were just ruling it out.” The next few minutes seemed to take hours as they explained what CF was. They told me we would be in the hospital for five days to two weeks for Reid to start aggressive treatment. My first thought was, I only packed for two days! (I still didn’t understand what we were in for.)

Everything from there was a whirlwind. We were immediately taken to chest x-rays and then for pulmonary function testing. Reid was being such a trooper. He was flirting with the nurses and respiratory therapist, making jokes and just being a six-year-old little boy. My husband, Bear, as the boys’ call him, and I were in a daze, just going through the motions. After the testing, we were taken to Reid’s room. He thought it was so cool because there was an Xbox in his room. It’s amazing how resilient children are and how the little things can excite them.

We ended up being in the hospital for two weeks. Reid already had lung damage and some other things going on which required more time for treatment. He was so brave and strong through the whole two-week process. He always tried to be very brave and not cry. One day, he just broke down. They were taking him in for a PICC line, which is an IV line that is put in through the upper arm and threaded down a vein closer to the heart for easier medicine delivery. He crawled up in Bear’s lap and just bawled. He hid his face so no one could see him. He didn’t want anyone to see him cry. Needless to say, as soon as they took him from us to go in for the procedure, Bear and I lost it. That’s the first time I had cried over this disease for my son, and it wouldn’t be the last.

The last year has been one filled with learning tons of information and also filled with tons of medicines and treatments for Reid. Reid spends 1-2 hours a day doing treatments which require him to be hooked up to a vest machine that shakes him to help loosen the junk that collects in his lungs. He also takes around 20 pills daily as well as two different inhaled medications and two different nasal medications. That is all when he is healthy; when he is dealing with a sickness, the medications go up and the treatments go up!

I am so proud that God chose me to be Reid’s mom. I’m as proud as any mother could be of her son. He made the All Star baseball team this year! He practiced so hard for several weeks. Two days before his first tournament, Reid became very sick and had to be taken to Children’s again. He missed every single All Star game because he was in the hospital. He never complained, never asked me why, and never lost hope.

Last week, I was driving the boys home from school. In the back I heard Reid say, “I want to fight fires when I grow up to show off my mad skills!” His brother replied, “Reid, you can’t do that. You have a terminal lung disease,” to which Reid replied, “When they find a cure then I am going to be a firefighter.” That’s my Reid. One day we will find a cure.