Sunday, February 7, 2010

Congenital Heart Defects Awareness Week Begins - Giving Thanks for those who Give Hope

Today kicks off a national campaign to raise awareness of congenital heart defects!  Bean's problem was Dilated Cardiomyopathy - the cause is idiopathic AKA "we don't have a clue".  Right now, as she is "creeping" across the living room floor towards me (she isn't quite crawling yet...she has a really big head), I think about how lucky we were to have someone as knowledgeable as the doctor who admitted her at Sutter Memorial in Sacramento.  So, my focus this week is going to be on the doctors, nurses, surgeons, specialists, etc. who make survival of these little ones so much more probable than in the past.  Some of them will be ones that Bean worked with directly, others will be those I hear about on the parents' listservs I am active on and still others will be those we would probably never hear about because they are doing research quietly in a lab somewhere.  Hopefully, this will serve as an introduction to some of the people who can help families who feel helpless and give hope to those who feel hopeless.

After spending five days in our local hospital with what we thought was complications caused by RSV, Bean was transferred to Sutter Memorial's PICU because she was going to need to be on a ventilator to help her little lungs clear.  We received a call as we were driving down from the admitting doctor, Daniel Falco.  He told us he was going to have to intubate her (as we had already been told), but wanted to know if anyone had spoken to us about her heart.  No one had.  He told us it was five times its normal size and that Bean was a "sick little girl".  My heart sank.  When we arrived, he had intubated her and wanted to talk.  He took us to a waiting room with bright murals and comfy chairs and there he told us that the intubation was complete but had been "a little harried" with Bean reacting negatively to the Ketamine he used to sedate her and she had almost stopped breathing.  He was very honest and forthcoming and I think both Jason and I felt MORE confident in him because he was honest with us than less confident because something had gone wrong.  He told us about her heart and that he was referring her to a cardiologist on staff who would be by to speak with us and he had ordered an EKG and an echocardiogram.  At the time, I had heard these words, but had no idea what they were and no experience with these types of tests in the past.  Dr. Falco sounded totally competent, he was confident in what he was saying and he had a way of sounding comforting despite the fact that he was telling us things that were totally disconcerting.  He had a plan, he sounded determined and we felt confident that things were going to get done that needed to get done.  This is, I think, a major factor in making the difference between a good doctor and a great doctor - if they can communicate effectively, make you feel totally confident in what they are doing AND get what needs to be done done, then they are great.  If they get what needs to be done done, but makes you feel like you are in the dark or not sure of what or why things are happening then they are good doctors, but not great.

Dr. Falco was Bean's doctor for only a week.  I believe he was a big reason she was transferred to Lucille Packard Children's Hospital so quickly.  He had done both his residency and his fellowship there.  In  addition to his being a doctor at Sutter Memorial, he is also on the board of the Child Abuse Prevention Center.  He has a pediatrics practice in Sacramento in addition to serving in the Critical Care area of the PICU at Sutter Memorial.  He is an excellent doctor and I think was the first step in making Bean a survivor of a CHD.  After writing this blog post, I realize that I want to let Dr. Falco know how I feel, so he will be receiving one of our Valentine's Day cards with Bean's picture on it and a note explaining my gratitude and appreciation.  I only hope/wish that everyone can have a doctor like Dr. Falco if they have to go through discovering a child of theirs has CHD.  Thanks Dr. Falco!

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