Today, my daughter fell asleep in my lap. It shouldn't seem like such a big deal, but it rarely happens, and not because she's approaching her fourth birthday but because she's usually hooked up to enough machines to make such a blissful moment impossible.
It was a little piece of heaven, solace in the midst of a chaotic storm.
A month ago, Lily was hospitalized yet again. In the course of her treatment, her doctor and I discussed the fact that it's getting harder and harder to get an IV in Lily. Veins don't heal easily, especially when you don't have much time in between using them. We decided to pursue a port, a semi-permanent access point that would go into one of the major veins and allow us a lot more options in Lily's care.
Game day came and we did an ultrasound only to be shocked by the results. Where there are normally four major veins in the chest area, Lily only had one that might be usable. The crazy fight for her life that's a few years behind us now left so much damage in the wake of the miracle. And that one vein isn't a great option, just a maybe option.
Surgery was postponed pending a complex care conference. A team of doctors made sure that I understood what not having access options means for Lily.
It means that her accessible veins are finite, and when we run out of options, we will not be able to treat the next illness she has. Further complicating her care is the fact that Lily has a condition called bronchiectasis. Because of this condition, she will have recurrent pneumonia for the rest of her life. We can't prevent it. Our best hope is to lengthen the time between episodes and hospitalizations.
This news is scary. Even now, a month and a conference later, there is so much that I can't wrap my mind around it entirely. The question is faith or fear, but the answer is obvious.
Lily has joy. So much joy. A life like that is worth fighting for every moment of it, no matter how many or how few those moments end up being. And we choose faith with a life lived in hope, casting fear aside to rejoice in what we have instead of solely mourning what we don't.
So we fight. We had a care conference and made a plan. We'll increase our efforts to keep her from getting sick and to avoid triggers that lead her down the path to pneumonia. We'll use antibiotics at home to try to avoid hospitalizations. We even have a doctor on call to authorize antibiotics without an office visit if I say she needs them. And when we do have to go to the hospital, we'll protect those veins in any way we can.
No moment is ever promised to any of us, and time with Lily has always been even less promised. But while no moment is promised, every moment is treasured.
