Tuesday, May 18, 2010


This is my perspective from my little corner of the world.  I want to make clear that I do not think that this story is about me.  There are a group of people over in Birmingham Alabama that have tremendous strength and faith that I only hope of one day obtaining and, I  know that I will, because of the example that they have displayed for me..  Please also know, that a lot of this is what I've concluded from information coming from here and there.  I have read countless medical journals and even e-mailed back and forth with several pulmonary doctors but still have only understood half of what I've been given.    But, I keep being asked about what's going on and I keep waiting on a complete story to tell.. A story of healing one way or another.  But, for whatever reason, Tony keeps hanging on.. And it makes me believe that for some reason that I don't understand, the importance is in the fight.

I have written about Tony before.  He was born with Cystic Fibrosis and had a Lung Transplant in July 2009.  You can read previous posts that explain those situations in more detail HERE.  Around Thanksgiving, he went into the hospital with an infection.. He had many treatments going in and out of the hospital and a few surgeries, one even removing the part of the lung with the infection.  When they removed a part of the lung, they thought they had taken care of the infection..   He went back in for a check up a few weeks ago and found out that the bacteria was growing back.  We have since learned that the bacteria is
burkholderia gladioli.  Until somewhere between 1996-1998, this bacteria was only thought to exist in plants.  They have since learned that it is a common bacteria in adult CF patients.. Apparently, there are different bacterias common in CF patients at different ages.  This particular bacteria typically lies dormant in the airways and sometimes is able to take hold after a lung transplant because the patient is immuno suppressed. 

I think it's  been a week now since I got the first call.   It was either Monday or Tuesday.  The days are all blurred together.   My mother called quite hysterical saying that it didn't look like Tony was going to make it.  The doctors had said that they were stumped.  They were calling other transplant centers to ask for suggestions but they had tried everything they knew to try.  The antibiotic was killing the bacteria in the culture, but not in his body.  They spoke with some doctors in the pulmonary department at the University of North Carolina and began a new treatment.  On Wed., they made the decision to put Tony on a ventilator so that he could rest and give the new treatment the chance to work.  The family was called in several times because his stats had began to drop and then they would rebound again. 

Through this all, I've been torn with what to pray.. It has been a rollercoaster of hope and doubt, fear and bravery, sadness and yes even some happiness.  But, mostly bittersweetnesses.  We all believe in an afterlife better than we could ever dream of.   We know that if anyone has lived a life worthy of God's presence, it would be Tony.  We know that through Tony, God has sent us two precious angels (his wife and son) that will help carry on his name.   Yet still, I can't give up hope until his heart stops beating.  And then, it would only be a new hope..

My cousin Tracy and I talked for a long time yesterday and she told me about a prayer that she had seen someone else write about him. It went something like this: Our faith longs for your will and knows that your will is best but our hearts pray for healing. We felt like that adequately expressed our thoughts and it has become my prayer as well.

I hadn't slept for more than a couple of hours for days (this is nothing compared to what the family that is there with him has gone through) but, I knew that if he does go (I just can't bring myself to say "when" he does go), I couldn't drive over there on that little amount of sleep. Plus, my family here all had a cold a couple of weeks ago and mine is still lingering in my chest.   I don't think I'm getting over it because I haven't had any rest. So, I took something and went to bed at 8:00p.m. and woke at 5:00 a.m.  There is so much more to say but my heart cannot find the words to express my feelings.  My family covets your prayers and thanks you for the love and support we've felt from all over the nation. 
You can read Tony's wife's caringbridge journal entries that give the latest updates HERE.  What a miracle she is!  Our family is so blessed that she chose us to be hers..