As in Nuclear Medicine. Ky did REALLY well with her Nuclear Renal Scans.
I was so proud of her! All it took was a bag of jelly beans and an Alvin and the Chipmunks video!!!!!! Who knew? I have to go ahead and tell you how much my princess amazes me. She is by far the strongest woman I know and she’s only two. After having infection ravage her body for weeks she still smiles and laughs. Even when she is burning up with fever she manages to play and sing. I wish that I could see the world through her eyes. I wish I could feel the wonderful imagination and awe as she plucks the petals from a rose bush and says “Hiyah..” like a karate chop should ensue after. I wish I could feel the sting of fear as the simple sight of doctors, who are her one hope for a normal life, send pains of intense terror down her spine. I wonder sometimes what she thinks of these scrubs and white coats. I wonder if she knows that these people are saving her life. I wonder if she knows that we would ONLY allow these things to happen to her to help her. I wonder if she knows how amazing she is.
That leads me to the quandary of the day. Why is it that our life can never just be straight joy? Every victory is laced with some silver lining news that seems more awful than any news we have heard yet. Yet that seems to be your GOOD news of the day. Does that mean that our days are getting worse? Is that possible? Each new piece of information just grabs you by the throat, taking your breath and threatens to not let go until is sucks every ounce of strength from your body. Every “I am sorry” look that the doctors give you, have the ability to drain the lifeblood from your body.
We have been on our Urological journey for 9 months now. In the midst of our journey we are so privileged to find others to share each portion with. I want to ask for prayers for a friend tonight. Today my friend received the news that her daughter also has deteriorating urological health and will need to be cathed. I remember the exact room we were in, what we were wearing, the toy Ky was clutching as the doctor gave us the news that Ky would need to be cathed. I remember asking him “What are the chances that she will ever be continent without medical interventions?” and I remember him looking at the floor with a gentle smile as he shook his head no.
Today we saw that same shake and nod again as he delivered the news that Kyleigh’s kidneys are in fact failing. As they put it there is “diminished capacity” in both kidneys. Her right kidney is barely functioning at 30% (at best) and the left at 70%. One thing that I find myself incredibly thankful for is that she DOES have TWO!! Not every child is given that blessing. So once again I stood by Ky’s bed as we were dealt yet another “Joker” card. As I asked the doctor what do we do about the kidneys the overwhelming passion in me rose up and I had to ask a question that I already knew the answer to. “So what do we do about this? What CAN we do?” That is when the gentle smile and nod came at me again with its innate ability to leave a resounding lump in my throat as he said “There is nothing you can do… you don’t get that function back”… I was too busy trying to keep the tears from spilling out of my eyes to ask more questions but eventually those questions will come and he will do more shaking and nodding as he answers those.
What happens when she looses the other 30%?
How fast will that happen?
How do we stop it?
Even with all our efforts… and they have been innumerable, I have failed to protect Ky from this. I have known in myself that something was not right … and no matter how hard I tried I could not get anyone to listen. I am sitting here reflecting and I will allow myself only a moment to think.. WHAT IF.
What if we had caught this sooner?
What if we hadn’t let this infection continue on?
What if we had fixed her cord sooner?
What if we had cathed her better?
What if… tonight I will spend my night dealing with the WHAT IFs that have overtaken my mind and I will likely fall asleep in tears as I have many nights before. But I will rise again in the morning with a new day and a new resolve to find a way to keep this from getting any worse… I refuse to let this horrible thing win. My daughter was dealt a horrible blow with so many other issues that I refuse to allow this to take her, the her I know, from me.
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