The Big Picture

My husband is a very special, spiritual man as you might have read and I am so blessed that he is not only my best friend and spouse, but the love of my life as well.

The question of the day...Why does life have to be so difficult? and why for so long? Just a thought as I sat with Eden today and she continues to fight and struggle just to survive. Don't get me wrong and please do not get the wrong idea from my words, but she is having a rough time. We are two weeks post-op and her doctor are no longer telling us that she is doing better than expected. Over the weekend she really stopped making any progress and has regressed a little in their eyes. She is retaining more fluid than right after surgery and she is still unable to ween down on her medications so that her heart can function more on it's own. Over the weekend her white blood cell count (indicator of an infection) went way up. It should be in the mid teens and hers is at 44! They have sent cultures away from every port imaginable and everything is negative so far and they do not think she is septic right now, but no one is positive what is causing this. She is not febrile (feverish) rather a little cool. They continue to treat her for a bacteria in her ventilator tube and are now adding another antibiotic for a possible fungal infection. The Infection Disease doctor said he would keep us informed if anything starts to grow. We have been septic once before and I so hope that does not happen again. They tell us time and again that the more time a patient stays in the ICU the more prone they are to different infections. She is still heavily sedated as she does not maintain her stats when she is awake and upset. I know this is so hard to understand, but there are no other options for her right now.

I had a very long, frank discussion with her intensivist today and it was good, but heavy. All of her doctors feel that she had a good heart repair, but she still has a severe case of diastolic dysfunction. Imagine that your heart is like any other muscle and needs to contract and relax. The contraction phase of our heart is the systolic portion and the relaxation phase is the diastolic period. Her systolic or contracting period has improved since surgery, but her diastolic or resting time has not improved at all. This would be like us contracting our bicep muscle nonstop without a rest, it can only contract for so long. She is on two different types of medications to help it relax and we are finding that when the try to ween from those, she struggles. This all goes back to the hypertrophy or enlarging of her heart due to how sick it was. Her docotr told me today that signs of diastolic dysfunction are fluid retention, especially in the face and blood pressure issues. Both of which pertain to Eden. As far as the other systems in her body: her heart I explained, her lungs are still very sick and she could possibly struggle with chronic lung disease, her kidney levels are elevated, but they have been since the get go, her liver enzymes are also elevated, but her liver is still getting rid of her body's toxics and her bone marrow is not able to make new blood cells because she is so sick. Hence all of the transfusions. Yes, I really went for broke on my questions today! My question then was, "Where do we go from here?" She said that we have to find out and treat her elevated white cell count and in a couple of weeks if she is no better than she is now, we will all have to reevaluate. We feel like they are doing everything they can to make her better, it just concerns them that she is not progressing any longer. It is hard to imagine that a parent would have to ask these kinds of questions and really think about what we will do if...?

Eden has a long, difficult recovery ahead of her, but if anyone can do it I am confident that Eden can. It always amazes me that although I am at my breaking point with inner turmoil, as soon as I enter her room I am filled with a very calm, peaceful, loving feeling. I pray daily that the Lord's sweetest angels are attending her right now and giving her the comfort that I can not always provide. Her doctor on Sunday said that she is truly a miracle to have made it this far and she is my hero.