Caleb Update 12/22/23

Hi everyone,

We wanted to post another update before the holidays. A little over two weeks ago, as we were preparing to be discharged home, Caleb started to have worsening nausea, vomiting and belly pain. He was unable to take in anything by mouth as well. The team here was hopeful that after a couple of days of belly rest and with a little time, he would bounce back, but unfortunately his symptoms have continued. 

He has had a very in depth workup, unfortunately without many answers. On one hand, we are relieved that it appears it is not graft vs. host disease, as this can have many serious and long lasting implications, but on the other hand, we still aren’t sure why he is having so many issues with his GI tract.

This week he began to run fevers, again without a clear source, and he had a different type of feeding tube placed, which allows us to bypass his stomach and give feeds and meds directly into his small intestine. We are hopeful that by bypassing his stomach, we can alleviate some of his nausea and pain and still get meds and nutrition into him. Caleb has been such a trooper through all of this. He hates the feeding tube and the way it feels in his nose and throat, so he doesn’t want to do much talking or even swallowing for that matter, but slowly he is adjusting to it. 

It looks like we will be here at the hospital through Christmas and possibly even through the new year. Felix will be able to come visit us here on Christmas day with my parents which we are really glad about. We will keep you all posted on how long it takes for Felix to officially destroy the hospital room!

The reality that we will be here in the hospital, and apart as a family through the holidays, is a bit of a hard pill to swallow, but we remind ourselves daily that this isn’t about one holiday, but about every holiday for the rest of Calebs, hopefully long and beautiful life. If there is one thing that being here puts into perspective for us, it is that people every day are enduring the unimaginable. Many who are doing it with very little support. Life is hard, really hard and also immensely beautiful. If this time of year is hard for you, just know you aren’t alone and we hope you find even the smallest drop of joy as the year comes to a close. 

Thank you again from the bottom of our hearts to everyone who has sent love, prayers, thoughts, cards, gifts, donations…the list goes on and on. Sending lots of love right back to you!

Colleen and Mike