10/21/2026
When Kayden was in the hospital waiting for his transplant, he was on a multitude of meds - some of which being heparin, lasix, steroids and ultimately 2 years of bed rest; the perfect storm for causing weak and fragile bones. During the two years at Nemours, he ended up with multiple compression fractures on his spine and even fractured his femur.
Fast forward to now, we do an infusion twice a year that helps slow down the breakdown of his bones to allow them time to regenerate and strengthen! What that means however, is that I have to admit him into the hospital for a period of 3-4 days to get the infusion and then have electrolyte labs drawn every day for 3 days to ensure his body responds well to it before he can come home.
If you have a kid that has ever spent a significant amount of time in a hospital, you know how tough it is to put your baby back there no matter what the timeframe may be. Also, at 3 years old, I still can't quite figure out how to explain to him that it will only be a couple days and we will be home soon.
So . . . pictured is what it looks like to pack Kayden for 4 days in the hospital, me for 4 days at Ronald McDonald House and then Kayden for one overnight with me at the Ronald McDonald house (meaning all of his overnight meds, feeds and supplies) once he's discharged! I will do any and everything to make my boy feel at home, even if it's 80 miles away! So 40 bags and a huge suitcase it is! To Delaware we go!
