Back on the Inside

Tuesday, May 16, 2023 · by John Lilly

After a month of pretty uninterrupted positive progress after his transplant, Sam started feeling a little bit off at the end of last week (some nausea, low grade fever, tiredness, not much appetite, some weight loss). We checked in yesterday at our 2x/week clinic and the team adjusted some meds. Didn't really get better yesterday or overnight, so we came back in this morning -- and the team decided to go ahead and admit him into the hospital today. 

They're not alarmed or anything -- as I think we've shared before, some level of re-admissions is expected -- but they'd like to know the root cause of the issues, so that they can treat it directly, instead of trying to manage the symptoms. It could be GvHD; it could be an infection of some sort; it could be normal GI stuff. But since they don't know, the plan is to have his stomach scoped so they can take a look around and see what's happening. That's a procedure to do under general anesthesia, and in patient means we can do it in the next day or so instead of over a few weeks.

At the same time, we're running labs, getting Sam's blood cultured, etc. And monitoring everything, getting him fluids, etc.

Hopefully we'll figure things out and it'll be no big deal -- that's the expectation.

Sam is annoyed and bored, and disappointed to be back after spending so many days here last mont. And he's recently made tons of progress on finishing his junior year classes and starting the college application process (yikes. what a crazy & dumb system these days.)

On the upside: since we finished the New Super Mario Bros Deluxe, we've been working on the New Super Luigi, and this'll give us some time to work on it! Whatever else this time has been, we've definitely made some new family traditions that'll last us a long time. :)

Anyhoo. More soon.

♥ 38 hearts

17 comments

Bryan Rollins · Tuesday, May 16, 2023
Annoying, yes. I was admitted a few months post transplant because of an infection (that came from my donor). The psychological "back in the hospital" can be worse than the illness. But glad you are all over it and at this stage it's always better to take action. His immune system is probably still rebooting for quite a while, right?
John Lilly · Tuesday, May 16, 2023
yeah, he doesn't have many B cells or T cells yet. his body is kind of faking them. we just don't want to let bad actors get any critical mass. with sam, we're trying to focus him on getting back to school & life without restrictions as fast as possible -- but he wants to be well now. (kathy & i are absolutely in that camp too!) It definitely feels to him like a step backwards. but we'll get there
Suchi Sairam · Tuesday, May 16, 2023
Sending lots of love and positive mojo for Sam ❤️ #TeamSam
Michelle Stewart · Tuesday, May 16, 2023
Well, that is poopy. I'm sorry y'all are back to the hospital routine, even if it wasn't surprising. Sending hugs as always to those on hospital duty and those at home. <3
Dana Lilly · Tuesday, May 16, 2023
Sending lots of love and hugs ❤️. Hopefully this interruption will be over soon. So glad the doctors are so readily available and willing to do everything they can to help Sam. That’s great! Hang in there 🥰.
Blake Korb · Tuesday, May 16, 2023
Feel better soon, Sam!
Andrew Korb · Tuesday, May 16, 2023
Sending lots of love from Florida. Thanks for the update. Regarding college: I can't imagine anything more fun than scouting colleges! Keep us posted on that!
David Hornik · Tuesday, May 16, 2023
I’m sure that Sam will beat this and Luigi!
Cindy McLaughlin · Tuesday, May 16, 2023
Oof - that's a tough setback after so much consistently amazing news! Sending lots of tenacity to all of you and well-wishes for Sam's speedy diagnosis + recovery
Grandma Howe · Tuesday, May 16, 2023
Grateful that they are treating the root cause as quickly as possible, though I know that Sam is disappointed to be back in the hospital. Sam, we hope you are feeling better soon. Lots of love from your family in Texas❤️.
John Lilly · Tuesday, May 16, 2023
So sorry this is disappointing, Sam. Hope it’s taken care of quickly. We love you and are pulling for you to have this resolved.
Sean White · Tuesday, May 16, 2023
I hope it's just a passing thing and Sam feels better real soon.
eve blossom · Tuesday, May 16, 2023
Glad that they are looking at the root cause. Feel better soon, Sam and beat the crap out of Luigi!
Natalya Crump · Tuesday, May 16, 2023
Understandable to be disappointed and annoyed at this setback. Glad you all are stomping it quickly, though! Go Sam!
Elizabeth Gomez · Tuesday, May 16, 2023
Good luck! Hope Sam feels better soon!
DJ Patil · Wednesday, May 17, 2023
Hope it's just a quick stay! Rooting for you Sam!
Rafael Bejar · Wednesday, May 17, 2023
I don't know if he's into the Zelda franchise, but if he liked Breath of the Wild, he'll love the new Tears of the Kingdom that just came out. Our kids can think of nothing else. with that said, be careful, he might prefer the game to college applications!