Chapter One: The Fabric of Our Cystic Fibrosis Family Quilt

Chapter One:  The Fabric of Our Cystic Fibrosis Quilt

I think it important to tell this part of our story because it is vital in the way Matthew has been taken care of.  They mystery of how God puts us in the right place at the right time, the way he guides us towards those who will eventually become vital structures in your life, the way in which He works his special magic that only He can even if it feels like you are lost to him, he is guiding you. 
Jack Waldbridge was a friend of my parents that they met through work.  We had known him for years and we knew he had a son who was sick, and we knew it was called Cystic Fibrosis, but we didn't know anything about it. When mom told me about the walk, I said, "OK, let's do it, we'll take Matthew".  So, two weeks before Matthew was diagnosed with Cystic Fibrosis, on a beautiful sunny day, my mom and I walked.  She walked through the pain, again I believe guided by God because He needed her to be there, to feel the connection between this family friend who lot their son ten months before Matthew was born and ours.  Momma hurt her foot, but we walked, something told her we needed to, I think it was Jarryd introducing us to what would become of branch of our Cystic Fibrosis Family.  Two weeks later, Daddy and Jack sat in the first floor family conference room and cried together.  The words of their conversation were never shared, that was a special moment between friends, a bond which our family and theirs still shares.  
It was 2004, we didn't have smart-phones, well people who were important did, they had Blackberry's... That's all there was.  There was no Wi-Fi, Laptops were incredibly expensive and not a luxury most people could afford or even thought to have, and honestly, we wouldn't have known what to do with it if we had it because as I said, there was no Wi-Fi.  It was age before “google”, WebMD was about the only source where you could find anything anyway.
Although the nurses who had been there with us throughout Matthew’s many admissions over the first 18 months were special, Rosanna coming to mind, Jeanne, Jessica, Laurie, and those who came later...
One of the nurses who especially became part of our CF Family was named Jessica Smith.  We became dear friends, sadly we have lost touch, life gets in the way but she will always have a special place in our family.  
Another nurse who was with us was Laurie Damare, Laurie has a son who is Matthew's age, Tyler plays soccer with Matthew, the fabric of our lives are very interweaved.  One of our respiratory therapists, Sheila Hancock, is amazing.  She can beat a child like nobodies business and it turns out that her daughter Courtney was in Matthew's Kindergarten class, and guess what... They were born on the same day, in the same hospital, within twelve hours of each other.  Courtney and Matthew are still friends today, and we consider Sheila part of our CF family and she is a part of the fabric that forms the quilt of our family.  There are many others, too many to list but you are all important.  Brittany, Beverly, the two of you became my rock in this later years. 

There is this other nurse, who came and left only during certain times and at first I didn’t understand who she was and why she was there.  She was so knowledgeable and helpful and she adored Matthew from the beginning, Jeanne told me yesterday, February 24, 2012, "Don't forget us".  Jeanne, I could NEVER forget you... How could we possibly forget the first person Matthew had a crush on.  You have a very large piece of our quilt.  You have wrapped us up and held us together through all of this from diagnosis until right now, and until forever... For all of you, we are forever grateful.  You fought with me, you listened, you didn’t doubt me, you never thought I was crazy and you always knew I had Matthew’s best interest at heart.  For you, I am eternally grateful and so is my family.  These are my words, Tommy is a man of few words, and I was blessed with my Father’s gift of words, so I will not hold back.  Jeanne, from the bottom of my heart, I love you.  Don't think that if I didn't mention you, you aren't important... You are all important, there are just some people who were there from the beginning... The VERY beginning, before the beginning... Before we knew there was anything to begin.

I think I need to stop here for a moment, and talk about someone who I mentioned in my first entry.  I want to talk about a person who never gives up, never rests, always fights.  His compassion and devotion to all of his patients and their families I don’t think is praised enough.  And although, for a time, we strayed from him, Dr Eduardo Hernandez I would say is the border of our CF Family Quilt.  He has held us together, put us together, put us back together, given us hope, given us faith and now, along with Vertex he is giving Matthew life.  A life that I never thought he would have.  We have not always seen eye to eye, your methods and my ideas weren’t always the same but we worked together and I don’t know if any other doctor would have put up with me the way you did.  Do you remember the first words you said to us?  “This is not asthma, I do not know what it is, but I will not let you leave until WE know what it is.”  I will never forget that, and you held true to your word.  You found out what it was and WE treated it.  We all love you, and we look forward to watching Matthew grow up, with you, still along our side because you will forever be the edge of our quilt that holds us together.

Preface: This is how we got here

Matthew was born on December 19, 2002 at 8:54pm and he looked perfect... He was perfect... As babies go, I suppose he was "normal", at least to us because we didn't know any different. Who knew that babies that were only a month old didn't take a six ounce bottle ever four hours and have a dirty diaper every time he needed to be changed. We didn't know any better, we just dealt with it. Thing started getting different when he started getting sick... A lot! He was constantly in and out of the doctors office with ear infection after ear infection and upper respiratory infection after another, we thought this was part of being a parent. It wasn't until he was bout six months old that something really seemed "wrong". Matthew laid on the floor of our apartment, fighting to draw each breath... Something each of us take for granted, the ability to draw breath to make your lungs function so that you can live... Have you ever watched you child struggle to breathe? Have you ever watched your babies lungs contract with the effort of trying to breathe?

Any parent who has a child with Cystic Fibrosis has done this. Any parent who has a child with Cystic Fibrosis knows what it is like to watch their child fight for life every day, and we didn't even know it. The first time we took him to the emergency room, he was so sick, they admitted him and we were in for several days with Pneumonia, or at least that's what they told us. No one took the time to look at the bigger picture of how often he was sick, how many times we were in and out of the doctors office, how we were back in with another infection before it was time for the follow up for the previous infection. His doctor never took the time to listen and hear a silent plea for help to "fix" their child. This cycle repeated itself every three or four months until we found Dr. Eduardo Hernandez. It happened that he was never on call when Matthew was in the hospital, it was the luck of the draw that we didn't meet Dr. H until May of 2004. Matthew was sick... AGAIN, and AGAIN, we were told, "he has bronchitis and asthma". This time, his normal pediatrician wasn't there, and this wasn't the first time this happened... Each time Matthew was hospitalized as a "direct admit" from his pediatrician's office, it was because she was not there, she was overseas helping other people, when she couldn't see a child who clearly needed her help in her own office.
Dr. H came into our room and looked at Matthew, he interacted with us, he asked us questions, he asked us things we had never been asked before... "What are his stools like?"... What did he mean?? Well it turns out, it's not normal for your toddler to poop out a carrot the way he swallows it. That is, unless he has Cystic Fibrosis and is not being treated. Dr Hernandez told us that day, "This is not asthma, I don't know what this is yet, but I will not let you leave here until I find out what it is." That type of dedication and determination for a patient you just met, is remarkable. We knew then, that this man would be a part of our lives forever...
This is just the beginning. I could keep going, but many of you who are reading this know the story. Dr. Hernandez told us that there were other doctors, ones that specialized in CF and could treat him, but we really liked Dr. H, so we stayed with him for as long as we felt we could. When we reached a point where we felt we needed another opinion of how to treat him, we went to Tulane, a certified Cystic Fibrosis Care Center. This, is a great place. They have great technology, they have great people, nice people... But, they just didn't have what Dr Hernandez has. His personal care for his patients is admirable, I don't know how he does it. With Dr H. comes a team of his own, nurses who treat you like family, let you cry, vent, complain during the LONG nights at the hospital. They become friends, they become a part of your family.