"Access" is a word that we are all too familiar with now, and it has come to be the story of Cora's life. For those that may not know it in our context, it refers to intravenous access, or a method to deliver meds, blood transfusions, and other therapies. Cora has historically been a "very hard stick," meaning that it's nearly impossible to get an IV on her, and anyway, peripheral IVs are very short-lived so she has always had central lines. (A central line means that there is a catheter in your vein that travels all the way to your heart, through which things are dispensed.) Today the subject of access came up again, and it was decided that Cora would get a new central line, and so she did. It was, to be exact, her tenth central line.
That's too many.
It's too many lines, too many meds, too many chest x-rays, too many echos, too many labs, and way, way too many throw ups, and I am having a night where I just deeply regret all the too many's my little angel has had to endure.
The electrophysiologist came this afternoon to discuss the pacemaker surgery, the rationale for Cora needing a pacemaker (namely that her heart is likely to stop without one), and the bigger picture for someone who will receive lifetime pacing. The actual surgery won't be planned until Cora's white cell counts are reasonable and her infection is eradicated. The doctors and surgeons are still discussing the appropriate device for her -- they would like to use a bigger contraption because it has the most sophisticated technology, but the control box also has to fit inside her very little tummy, so it may not be possible. Either way, she will need future surgeries just given how young and small she is now, and the fact that this will be a lifetime issue for her. Once you get a pacemaker, you never go without one. The EP doctor also discussed one of the concerning factors which is that long-term pacing can lead to cardiomyopathies. This is an extra concern for Cora given her complicated cardiac history.
Oh yeah, and Cora hasn't gained weight in two weeks.
Sigh. What was I saying yesterday about staying in the day?
I did have a couple of wonderful moments tonight. One was giving Cora a bath and eating her toes afterward. The other was earlier this afternoon, when I could tell she was having a particularly hard moment. I laid my head in the bed right next to her. In her calm and quiet way, she just laid there and locked eyes with me. Our eyes, six inches apart. There is something about Cora, because when she truly looks at you, she seems to understand you and everything else on a very deep level. It's like she talks to your soul and creates a moment beyond words or understanding.
Usually when she's sick she never wants to look you in the eyes. I'm sure it's because she doesn't want to show you her pain, because she is just wise and compassionate like that. But this afternoon for a minute, she let me in. An overwhelming moment of love, regret, sadness, pride, gratitude, and love again. That washing-over-you love that makes you feel very safe and very vulnerable, all in the same moment.
Oh, there was one other moment I just remembered. I had her on my lap and we were watching a show together on hulu. (Photo below.)
Hi Michele - You don't know me, but we have a friend in common who told me about your little girl. I've been following along ever since, and keeping your family in my prayers. I look forward to reading updates on Cora's health, and on the rest of your family -- because you are both a gifted writer, and more than that a truly gifted mother. Take care and know that there's a mom in Massachusetts who is rooting for your family!
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