What You Need to Know
What Is Cystic Fibrosis?
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

• clogs the lungs and leads to life-threatening lung infections; and
• obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
Symptoms of Cystic Fibrosis
People with CF can have a variety of symptoms, including:

• very salty-tasting skin;
• persistent coughing, at times with phlegm;
• frequent lung infections;
• wheezing or shortness of breath;
• poor growth/weight gain in spite of a good appetite; and
• frequent greasy, bulky stools or difficulty in bowel movements.

Statistics

• About 1,000 new cases of cystic fibrosis are diagnosed each year.
• More than 70% of patients are diagnosed by age two.
• More than 45% of the CF patient population is age 18 or older.
• The predicted median age of survival for a person with CF is in the late 30s.

The Cystic Fibrosis Foundation
Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Thanks to the dedication and financial backing of our supporters — patients, families and friends, clinicians, researchers, volunteers, individual donors, corporations and staff, we are making a difference.

• Learn more about Testing for Cystic Fibrosis.
• Explore all aspects of Living with CF at every stage of life.
• See what Treatments are available and what’s in development.

On December 3, 2011 our lives were changed forever..  Hudson Kane Wilkerson was born at 1:18am.   5 pounds 12 ounces and 19 1/2 inches long.  The Dr. handed him to the nurse and says "Yup, looks just like the Daddy!".    He was a wonderful baby, we were overjoyed the day we brought him home from the hospital..  we had a family and it was perfect.   He looked just like a grown version of his father and thank goodness got his coloring!   He also had a full head of hair, which was amazing if you know either one of us!    We were new parents and were beside ourselves.   Michael looked at me multiple times over the first couple of days and said "Can you believe we created something so perfect?"   Actually he said "I" a couple of times but I know he meant "we" most of the time!  :)  

On December 28th our lives changed forever once again.    I recevied a call from Hudson's pediatrician that they had found a mutation for Cystic Fibrosis in Hudson's newborn screening.   They said it was common and to have one mutation means you are only a carrier.   The fear and panic set in immediatly.  We had an appointment the very next day at Texas Children's Hospital to do a sweat test.  No words can explain the emotions and feelings we felt over the next 24 hours.   The anxiety was sufficating and we were ready to know the outcome.   

December 29th, 2011-  The sweat test took 30 mins or so..  they put a device on each of Hudson's arms that made that small area sweat.  They were measuring the amount of choloride in his sweat.  We would be called by that afternoon with the results.   When my phone finally rang at 4:30 I had my mind made up this was not something we were going to have to worry about.  The Doctors voice was a bit of a blurr, all I heard was he tested positive and I remember nothing else. 

 Michael and I had to both be carriers to have a baby with CF.   We had a 1 in 4 chance of this happening and it did.   We had no idea we were even carriers.  Even if we had done the genetic tesing one of us carries a "rare" gene and the other carries a common gene and the rare one would not have shown up.  The state only test for 29 mutations and there are over 1400.  1 out of every 29 people is a carrier.

  

December 30th- We received a call from Sally Mason at Texas Childrens Hospital to schedule our first appointment.   They normally would have gotten us in the next day but due to the holidays we could not be seen until  Jan 4th.  We were instructed not to read the internet with the exception of the Cystic Fibrosis Foundations Website.   Of course, I tried my hardest but my fingers kept wandering.   We were devastated.  The next 5 days were the hardest I've ever experienced in my life.  We were so lost and uneducated, so scared and so sad.  We planned this pregnancy, saved the cord blood and did everything right...   how could this happen to us??   How could the one measure we took to save our childs life not work??   Cord blood can't change genes.   The anger set in.

January 4th, 2012- Our first appointment at TCH was a long one!   Supported by our mothers and my best friend, Michael and I were flooded with 5 hours worth of information on what we had to do to keep our baby boy healthy.   Our meeting began with Dr. Oremann, the CF Director.   Dr. Oremann will be Hudsons Pulmonary doctor.  Sally Mason - the CF Coordinator, Libby Spoede- The Dietician, Mary Trace- The Nurse, Lisa - The Respitory Specialist and ?- The Social Worker..  Yes, by this time I wasn't even remembering names, my head was spinning and I had a notebook filled with pages of notes that I couldn't read.   When we got home our electricity was out (thanks to some idiot in neighborhood cutting down a tree) and we sat on the couch stareing at each other while Hudson slept in his seat.  We were mentally exhausted and drained.  At that point we had made our minds up.   This was something we could handle and the fact of the matter was we had no choice.   You will do anything for your children and we will fight to the end.   We left the hospital that day with a sense of ease.   We knew what CF was and how to handle it.   We feel confident that we can beat this!

January 5th, 2012- Treament starts.   Because Cystic Fibrosis creats a thick, sticky muscus that obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food we began giving Hudson Enzymes before every meal.  We break up capsules and put the contents on a spoonful of applesauce, give it to him, then give him his bottle.   He quickly got the hang of applesauce and liked it!  Yes, 3 weeks old and eating applesauce!  

Hudson will take Enzymes for the rest of his life before he eats if 2 hours has passed by, not even a handful of chips or a piece of candy without taking enzymes.  We immediately saw a difference, we had no idea how hungry this poor baby was.   Before finding out about CF, Hudson wanted to eat constantly.  His body was not retaining anything, now we've fixed it!    More treatment...   we do a breathing treatment every morning and every night.  At first it was easy, he would just sleep right through them.   Oh how things change.   He now swings his head from side to side as if saying NO!   He pushes and slaps the part that hold the medicine and the mask to his face.   I know I shouldn't laugh but sometimes it's really cute and then there are the days he just screams through the whole 20 minutes.   Ever held a mask over an infants face for any amount of time?  Then you know.    Now it's time for percussions (morning & night).   We lay Hudson on his back, side and stomach and use a rubber piece to beat on his chest.  4 chambers on each side (back, chest, and both sides).   This take us anywhere between 18-24 minutes.   Again, sometimes he will sleep through it and other times he screams through it.   Eventually we will use our hands and when he turns 3 we will get a vest that blows up and shakes him, he will wear anywhere from 1 - 2 hours a day.  We are doing this to shake the mucus off his lungs.

We have to be very careful for the first year and keep him away from crowds of people where he may catch something.   We DO NOT want respitory infections!!    As Hudson gets older we will add other medications to treat the times that he does get sick but for now this is it.  Everything we are doing now is preventative measures.  The real test of time comes as Hudson grows older and we see the severity of his disease.  We are confident he will have a mild case!



Fast Forward....

February 14, 2012- Our second appointment at TCH.  From here on out we will visit with his team of Doctors monthly.  Eventually we will go to ever 3 months, every quarter and then every 6 months.   When Hudson turns 18 he will move over to the Adult care unit.   He will stay with this team of Doctors his whole life.  As they said "we will become family."   I speak to his Dietician on a weekly basis, several times as a matter of fact.  We discuss poop constantly.  This is how we know if Hudsons meds are working.   Anyway back to second appt.  They had a Geneticist come in and tell us they had found the second mutation.   It is less common but one they have seen before, the other mutation is one that 90% of CF patients carry and that is Delta508.   His lungs are clear and they are very pleased with his weight..  he weighed in at 10.2 pounds!  

February 27th, 2012- Here we are 3 months later.   Our lives have changed in so many ways.   Although we have experienced something so difficult, it is as if our family is closer.  Michael and I are strong and we will fight for Hudson to have a wonderful life.  We will be an Advocate for Cystic Fibrosis and speak out for our son.  We will raise money for research to help find a cure for him and others out there.  Our son may need a little more attention than others but he will laugh, play and be just like the other kids.   He will play sports (baseball Daddy says), he will go to college and conquer any dreams he may have.  Our road ahead may be hard but we will find the best in it.  We will live and love everyday like it's our last.

Today Hudson feels great!  He is eating us out of formula.  We are constantly changing his enzyme intake trying to get it right.   We now give him Miralax every day to help with constipation and he takes Prilosec morning and night to hlep with the gas the enzymes leave him with.   He takes a liquid multi vitamin to help him retain vitamins that his isn't capable of retaining on it's own.    He started smiling at 6 weeks old and now is becoming quite the ham!    He very much takes after his Daddy and does not like to be woken up!   He is playing with his activity sets and we are practicing "tummy time" so his neck and back get stronger so that we can use other toys that were given to him.

I will post pictures and updates on here as much as possible.