May 22nd — Hospital Day 4
The morning after Eli's procedure was hard to see. He woke up extremely swollen, his eyes were nearly closed, and honestly he looked like a different kid for a little while. It hurt to look at him. We knew some swelling was expected, but nothing really prepares you for seeing your child that way.
We also got the confirmation we were dreading. The infection is MRSA, which is a type of bacteria that is highly resistant to most antibiotics. Because of that, and because the infection involves the titanium plate in his skull, Eli is going to need to be on antibiotics for the next three to six months. When something like that gets into a foreign object in your body, it takes a lot longer to clear because the bacteria can essentially hide there.
Being admitted to a different floor added another layer of difficulty. We had gotten comfortable with the team during our previous hospital stay on another floor with staff who knew Eli and knew us. Starting over with new faces in a new environment is harder than it sounds, especially for a kid who already has so much anxiety around hospital staff.
One of the biggest conversations of the day was around medications. The team really wants to move Eli toward oral medications as much as possible, and we completely understand why. But what they are working against is real. Eli used to take oral meds just fine. That changed after his first hospital stay. It is not a matter of him not wanting to. He has physically gotten sick from the fear and trauma alone. We spent a lot of the day advocating for a treatment plan that takes that into account and gives him the time he needs to build trust.
Part of those conversations involved talking through what happens if we cannot get him to keep his medications down, because his antibiotics are critical right now. Getting this infection under control is the only path to starting radiation, and none of the backup options are easy. Staying hospitalized the entire time so he can remain on IV antibiotics is one possibility. Another is placing an NG tube, which would go through his nose and directly into his stomach so we could medicate him that way. There has also been some talk about home health care, which would actually be a real option now that he has the PICC line in his arm. That line is designed to stay in place for months, so in theory his IV medications could continue at home. We do not have any of that figured out yet, but we are asking every question we can think of to make sure we land on whatever is best for him.
Everything we are pushing toward right now is getting Eli to radiation. With how aggressive and fast-moving his cancer is, every day matters. We are doing everything we can to make sure we get there as soon as possible and that the time we have with him is as good as it can be.
Please keep praying for our boy.
🩶🦁🧠 #RoaringForEli
