Written Saturday, April 27, 2019:
Short update and some perspective and healthy reminders.
Lilyan continues to run fever each day, but mostly feels good in between those fevers. They stay between 101º and 102º and continue to come down with Motrin and Tylenol, so we aren’t overly concerned — just watchful. As I said in my last update, we feel like these constant fevers are an indication of how hard her body is fighting to beat this infection. She is very tired all the time, but mornings are typically better for her. Each day at about 2:00 pm, we see her really start to fade, and by bedtime, she can barely even hold her head up.
It’s hard to watch her go through this and twice over the past five weeks, both during some of our scariest moments with her, Scott and I questioned our decision to put her through this surgery. We knew that not doing it would’ve meant a short life for her, but we started to wonder if it might’ve been better to have given her a shorter life without all of this pain and all of these surgeries and hospital stays and really hard separations from her siblings. Without all of these powerful medications that carry, along with the hope of healing, the risks of life-changing side-effects and complications. Without all of this disruption to her normal life and regular routine, and the uncertainty that each day brings.
But as we talked through these things, Scott realized, and pointed out to me, that it wouldn’t just have been a shorter life for her. It would’ve been a shorter life that included exactly what she’s going through now — wound infections, in and out of the hospital, separations from her beloved siblings, pain, fear, surgeries, and medications over and over again. But instead of moving toward the hope of healing, we would all knowingly be moving toward the end of her life and watching her suffer from continually declining lung function and quality of life. That put things into perspective for sure.
So while Lilyan was outside in the sunshine today, waiting for her Motrin to start bringing her fever down as her doting sisters walked her around the neighborhood in her hospital-issued wheelchair (her old one no longer fits her re-formed trunk), I spent a little time going back through photos taken of Lilyan since her homecoming in June, 2014.
I wish so much that we had thought to deliberately get before and after pictures, but even these that I found are pretty shocking to us and remind us that, once we get through this hard season, it’s going to be so worth it for our girl! Her chest no longer rests on the floor when she sits, and this is one of the major changes that will save her life now.
Front views before surgery:
Front views after surgery:
Side views before surgery:
Side view after surgery:
So, no matter how much harder it might get from here, we once again feel confident that we did not make the wrong choice for our girl. And we are so thankful to be so close to a hospital with such gifted doctors who still feel it’s worth the hard stuff, and even the risks, to give our daughter this chance at a better life. There are other hospitals around the country that have decided it’s too risky to continue attempting these surgeries for children like Lilyan.
Here are a couple of fun shots of the kids playing outside together in between the rainy days we seem to have so many of right now. We are continually saying aloud to each other just how thankful we are to be at home at this moment even though the battle for health and healing rages on.