Swaying in the breeze on the Balmy Gulf Coast!!!

[ Angel's Journey ] Sarah's Flight ]

 

 

 

This page is dedicated to our daughter Angel!

Angel's birthday, was like any other, Frank and I had scheduled her birth, because I knew that I was having a c-section.  She was full term, 8 pounds, everything was normal.  The first couple of hours were completely normal, after that, our lives would never be the same.  At first, we thought that she was breathing hard, like her father, Frank, then we noticed that after nursing, she had started turning blue around her lips.  The next couple of hours were like a blur.  Angel was sent by life flight to Galveston, where she spent 3 weeks in the NICU.  She was stabilized and we brought her home, with a diagnosis of asthma, because of family history.  At that time we really had no idea of the road to come!

Flash forward 5 years, and many, many dr visits, and hospitalizations for pneumonia, and different infections.  We, Angel and I, ended up in the ER again late at night, Frank at work, as usual, and there was a young intern doing an ER rotation, who suggested that she was very, very ill, and needed to go to a children's hospital.  He suggested CF, or congestive heart failure, and my heart sunk, what was to follow was every parents worst nightmare.  We were sent by ambulance, to Texas Children's Hospital, and there we were met by several CF doctors, and a young intern, who was specializing in children's lung disease.  What followed was a whirlwind of confusing tests, and the task of trying to stabilize her, which they did quickly.  One night as Frank and I lay sleeping on the hospital floor, on sleeping bags, 

I will never forget the day that we finally got the first part of her diagnosis.  She was very sick, and we were horribly worried.  We were standing with some interns, and hoping for any answer at all, and as they filed into her room, one of them had tears in her eyes, and you know at that point, that nothing good is going to come from this conversation.  Anyway, we wanted answers, and their were none, but one of them spoke up suggesting that we seek a specialist in interstitial lung disease, and they told us that she had an idiopathic fibrosis, and no other real answers.   Frank and I sat and looked at each other, not really knowing what had to say, wanting to know everything, and nothing, we asked what the prognosis was, and the young girl started crying, and she said, it's not good. 

She was diagnosed as having fibrosis of the lung, and an idiopathic interstitial lung disease.

At that time it never dawned on any of us, that our daughter could have a disease, that no one had a name for, much less a cure for.  It would be 3 long  years later before she was finally diagnosed with ChILD (Children's Interstitial Lung Disease).   We were elated to finally have a diagnosis, but very worried about the prognosis.

Today, Angel is just like any other teenager, in some respects, but years ahead of most adults in other ways.  She loves talking on the phone, video games, baking, and cruises!!  But, she lives her life, essentially, in a bubble.  We have become germ-aphobes!!!  She has been home bound for school through our school district, for the last 2 years, with an awesome teacher, Terri Riley!   And she rarely goes out in public, not at normal hours, anyway.  We do occasionally venture out at odd times, Walmart at 1:00 am, Hobby Lobby, at 11, before the lunch crowd, the grocery at midnight, or between the lunch crowd and 2, but most of the time, Angel stays home, and me with her.   This self imposed isolation, was her decision.  

Up until two years ago, she attended the local school, which for her, meant, she was absent and home sick every other day, and eventually, she decided that being home bound was what she wanted to do.  A hard thing for such a young age.  The upside, is that she is now a relatively stable 14 year old.  She hasn't had pneumonia in the last two years, but she did just have the flu, which she sailed through, Yea, Tamiflu!!!  She is an honor student, and keeps up with her school work at home, without much prompting at all.   I can't say enough about her will to succeed against difficult odds.   Her outlook on life is amazing, her resiliency flawless. 

I look back from time to time, to several years ago, when we were sitting in the hospital with her, so sick, and at that time, with not very many answers at all, and remember her words, spoken with an adult conviction,  "Don't cry I'm not dying today, lets figure out a way to fix this!"  All of us doctors included dried our eyes, and that is the way that we live our lives, now, one day at a time!!!

 

 

 

 

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