Our three week staycation at the lovely BC Children’s Hospital is almost at an end. Does anyone else find it ironic we are checking out on the last day of what would have been our lovely two week holiday to Hong Kong and Phuket?? I think Addison might miss all the attention from the amazing nurses on the 3M Children’s Heart Unit, but it is time to go. She is far too knowledgeable about how to take her own temperature, where she wants the blood pressure cuff, and how the monitor comes to life once the oxygen saturation probe goes on her toe. It is pretty funny to see her “helping” the nurses but a little sad at the same time. At 18 months, this is her life. She already knows her way around the hospital halls far too well.
While I grumbled a lot about the sleepless nights, mind-numbing boredom of being stuck all day in a 12×12 foot room, and stresses of living out of my comfort zone, I am so grateful for the care we have received at BCCH. Over the past three weeks, friends and colleagues have constantly been asking about Addison and how she is doing. I usually give the simple short answer, “She’s getting better!” But the real short answer is this – without the diagnosis and treatment of her pneumocystis pneumonia, she likely would not have survived. PCP is almost always fatal if not treated. Yeah…pause a moment for that one to sink in. I don’t even want to imagine what might have happened if we had not gotten Addison checked out that day we were in for blood tests and just hopped on the airplane.
It’s never going to be easy dealing with the unexpected curveballs the Princess seems to really enjoy throwing at us. As our transplant nurse said to me that first day while she hugged me, “As a transplant parent, you never lose that fear.” Every time there’s a bump in the road, I wonder if this is going to be “the one”. As in “the one that won’t be quite as easy to fix/diagnose/treat/cure”. The reality is we are all vulnerable and life is uncertain even at the best of times. But for us, it’s right there staring us in the face every single day. So we always lean in and give that sweet little face a big kiss, then tell her we love her.
Elaine, Aaron and Addison