I am so grateful for this platform to share updates with everyone, but it means so much more to me than that. Sharing Joey’s journey here helps me remember and document all our family has been through, and gives me the space to reflect on it all.

Today marks a month since Joey’s transplant procedure. It has been the most challenging month of my life, full of so many different emotions- gratitude, anger, sadness, love- and exhaustion that surpasses even the newborn phase. I am working on accepting the hand we’ve been dealt, but I know I’ll never like it. And I think that’s okay.

It would be easy to frame 2024 in my mind as the worst year ever. But I am trying to frame it as the year that Joey got a second chance at life. And how amazing is that?! How lucky are we to have this extra month with our son? How lucky are we to get to see him grow this year, and all the years to come? I think the setbacks we have faced since his first discharge have made me lose sight of the very profound fact that we are so fortunate he is still with us. I never want to take that for granted, and will use that as a source of light when I’m feeling enclosed in the darkness of it all. It doesn’t matter how we got here (which, for anyone tracking, we still don’t know why this happened), this is the reality of our lives now. And though the first year post-transplant will be tough, especially as we are quarantining at home instead of the hospital, what is a few months to a year in the grand scheme of it all? I’ll take a tough year to ensure many more with Joey. To honor the life of the donor who gave Joey a second chance, and for Joey, to give him the best life we possibly can. One that knows no bounds of love, and one that is not defined by this event.

Thanks for sticking with me so far. As for an update, Joey is doing much better! A drain was placed in his abdomen a couple of days ago. This has brought him much needed relief and comfort, and at this point, he isn’t draining any more fluid. This is a good sign that his lymphatic system is healing well. Yay!

The doctors change over on Saturday, so nothing huge usually happens over the weekends. Early next week we expect they’ll try feeding him the low-fat formula for a couple of days, and see whether his abdomen fills back up with the fluid. If not, it’ll be back to his normal diet and, hopefully, home shortly after.

However, there is a vein connected to his liver that has been compressed, likely due to the pressure of the fluid, that they are still keeping an eye on. It seems to have become less constricted as the fluid has been drained, but if it causes a concern as Joey continues to recover from the fluid, they may do a surgery to expand the vein to make sure all the blood is flowing properly out of his liver. The constriction of this vein post-transplant, especially for his size, is not unheard of. As the veins heal after being stitched together they can shrink in size. Fingers crossed this is happening because of the fluid and it will work itself out naturally, and no additional surgeries will be required.

For now, we are just hanging tight!

All our love,

The Moschellas