10/25/2024
This has been a really hard week for us. We spent the week all pretty violently sick with reactivated Noro that happens in immune suppressed people. And what would be a tough day for most families, for us, is 2 ER visits, plus 3 sets of additional labs in one week as we anxiously wait to see if dehydration throws off her rejection meds, or gets us readmitted into the hospital because this period of time is so complex post transplant, it's like a fickle chemistry experiment. Layla has been poked so many times this week, that they're running out of good veins to use. We're going to the hospital every day sick as dogs, having been up all night, bathing Layla and cleaning up bodily messes. It's honestly been the worst week.
Tonight as I was looking at my feed, seeing all the photos of all the Halloween events, and kids dressed up having fun, I felt a deep ache of sorrow for my daughter. While we are so incredibly blessed and thankful to have been given this blessing of a new liver, I'm also sad that life likely won't ever fully be the same for her or us and that hurts. I know it won't always be this challenging, but right now I'm having a hard time feeling positive. I'm feeling sad for the normal things she's missing out on, the seclusion and isolation, the medical trauma. It all just feels really heavy right now and we're doing it alone without our friends and family and that makes it 10 times harder.
I know we'll get through this. Just feels really hard today.
