Wednesday, March 29, 2006

Starting Over... Again

Its funny how when things are going good for our children, we forget how sick they really are. Or do we just ignore it and live in the bliss of their current health? I am not sure, but I know that this last few months has given me a reality check on that topic.

Emma Grace spent all of January in ICU. We had 4 years of almost normalicy regarding her transplanted heart. Her function had been normal, her biopsies never showed rejection, until December 31, 2005.

Over christmas we had noticed changes in Emma. We noticed her heart rate was rising, her activity had somewhat lessoned, but most of all her weight had increased significantly. The positive mother in me needed to believe that she was just gaining weight like a champ, and that I should be grateful for her chubby appearance. The skeptical mother in me couldnt deny that this was a big change for my very very thin little girl.

We cut our trip short to my parents and headed home on December 31st. Our lives changed drastically that day... again.
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Once we arrived home, Emma's heart rate was 165. Her respiratory rate was in the 60's. We went directly to the ER. At the hospital, they informed us that Emmas heart function was "significantly compromised". They did a chest x-ray and found that her left lung had partially collapsed and she had pneumonia. She had no cough, no conjestion, no signs of pneumonia, which had always been present with every other episode. Her heart, stomach, liver and lungs all had fluid build up. Long and short, our angel was, once again, in heart failure.

We were stunned. We had arleady done this once before, we knew her odds, and again we started bargaining with God.

We spent the next month in the transplant hospital over an hour from our home, my mother in law moved into our home to take care of our 2 other children, we rented an apartment by the hospital and settled in for the unknown.

Emma was diagnosed with Transplant Related Coronary Artery Disease, and was re evaluated for another transplant. She laid still in a big girl hospital bed for almost a month (did I mention she was discharged for a breif time, turned blue and had to be life flighted back to the hospital? I never want to experience that again)

We have decided to try to get as much out of her current heart, using medications, before attempting another transplant. She is now in rehab 3 days a week to build back her strength so she can sustain another transplant surgery.

Thru all of this, I have experienced anger, depression, sadness, pity, anger and more anger. I have learned how strong I truly am NOT. I have watched my little girl fight for her life, again. I have fought with doctors, family, my husband, myself. I have crossed lines and mended relationships, but most of all I have been reminded of how fragile my daughters life is.

I have learned to yell at God when I feel I have no one to yell at.

Cherish your moments. Cherish your children. Do not ever become complacent or secure in their health. Marvel at their success and weep in their shortcomings.

Most of all, be real in your pain.


Blogger Moreena said...

I am so feeling for you. I'm glad you've posted here, and I think you've hit it exactly on the head in your last sentence. Writing is just one fantastic way to let out all that pain, to examine it, to shape it, and to learn from it. Thanks.

11:40 PM  
Blogger Sarahlynn said...

Heather, thank you for sharing your story. I too am the mother of a "heart kid" and I am in serious, serious denial. I know that if Ellie's heart condition ever worsens, I'll be depilitated by shock. "But, they fixed it!!!" you know?

10:27 AM  

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