It only takes a moment...
...to transform me into a heart pounding, hand shaking, thought racing, mess. I hate this part of our life. The part that is dependent on a tiny, white, plastic, catheter that resides inside of her chest wall and hooks into her aorta. That tiny piece of plastic keeps Ash here on this earth, in our home, breathing, laughing, growing, living.
Its in moments like the one we have just experienced that I start to think just who do I think I am? What am I doing? Do I seriously think I can pull this off? How could He have decided I could be her mom? Without Him I know I'm not capable of taking care of such a fragile child? Someone had to have made a mistake. I'm trying to stay calm, trying to breathe, trying not to lose focus of what has to be done. I'm trembling inside, doubting everything I think I know.
My hands are shaking and my heart is racing. Tears sting the brim of my eyes and I am determined not to start crying because if I do then I'm going to fall apart. Here we sit a mere 8 days from her 7th birthday and the best celebration I've ever planned...and now...we face losing it all? Over what? A stupid, piece of plastic?
Dave traveled to Texas A and M this weekend to watch Blake play, and I stayed behind with Ash. I wasn't willing to risk anything a week away from her 7th birthday. I didn't want to be on the road with her, out in the heat, or in a hotel room. She's been so happy, so well, so amazing for so long, and I wanted to keep her that way for her birthday party. Silly me...I am not control of any of this...not my life...and not hers.
The main lumen of Ashley's central line decided to break this afternoon. Right as her TPN finished and needed flushing off to keep from clotting off. The inside wall of the catheter broke and is forming a bubble each time I attempt to flush. Resulting in TPN residing in the line. That means its clotted. Dave talked me through a few solutions over the phone while I did my best not to panic. He remains calm, level headed, and steady...I on the other hand am losing it. I wish he were here! After taping and holding the bubbled section for support I was able to get a small amount of saline into the line, and then inserted some clot buster in hopes of opening it enough to be able to flush enough saline through to keep it from permanently clotting off from the glucose. I don't know if it will work. I'm just hopeful. He will have to splice and repair the line as soon as he gets home whether or not we are able to keep it functional. I just have to maintain the integrity of the outside wall to keep her safe from infection. If I can keep it held together without allowing the bubble to burst we may avoid disaster.
She has two lumens. We need both of them. Especially when she's sick for running IV antibiotics through. If we are forced to we will survive on one. It just throws us back into the real life challenges of having her life dependent on a plastic catheter. Anytime it is compromised it becomes really, really scary.
Ash has had this catheter for a really, really long time. We've been blessed. It was placed in hopes of getting us through another transplant. It was supposed to be temporary, but we all knew it was our last option. She recovered so well, and has been so happy since ex-plant, despite the recurrent infections of the line, that transplant has taken a back seat to life. Living has become the goal.
A life of quality. A life of happiness. A life of experiences. A life of joy. It all makes the face of transplant pale when compared to this life she has. Even with the central line. Its not ideal, but outside the fact that she has no bowel, and is dependent on this catheter for life saving nutrition, its been a good two years. A great two years. She is so happy.
So I sit here waiting, shaking, heart pounding, and eyes stinging...hoping for function, for a successful repair, and for a 7th birthday celebration to indeed take place in just 8 days, I realize that it only takes a moment to be thrown back into the very real life situation that our little one's life is very, very different than most. Its complicated, and fragile, and dependent on this little plastic catheters ability to function. That is a frightening reality.
She is so unaware of any issue and sits at my feet giggling so loud that I can't help but smile through my tears. She's the most wonderful person I've ever known. Choosing to live daily a life filled with joy despite her circumstance.