May 23rd — Hospital Day 5

We were up around 5 AM when we noticed fluid coming from Eli's incision again. It looked different this time, more watery and lighter in color, which was enough to put us on edge. We decided to keep him from eating in case they needed to sedate him for imaging or anything else. He went most of the morning without food, which made him pretty cranky, and honestly we do not blame him one bit.

Around 11 neurosurgery came by and said they were not planning on doing any imaging based on what they were seeing. Eli finally got to eat, and that helped. Still, the morning was a reminder that there is no such thing as a routine day in here.

The plan the care team landed on was pretty much exactly what we had been pushing for. We are going to continue the IV antibiotics for as long as possible to hit this infection as hard as we can and give Eli the best shot at getting to radiation on time. We are continuing to ask questions and advocate every day to make sure whatever comes next is the right call for him specifically, not just the easiest path forward. Radiation is now set to start June 1st. There is also a possibility we could be transferred to a closer location once treatments begin, but we are waiting on more information before anything is confirmed.

The one silver lining in all of this is his nurse Rachel. Eli genuinely likes her. He laughs with her, jokes around with her, and is actually comfortable letting her help him. That is a big deal for a kid going through what he is going through, and it has started to carry over to some of the other staff too. It is small, but it matters.

Later in the day something really special happened. The Toy Department (our favorite toy store) put together a care package for Eli full of Spider-Man, Sonic, Cars, and superhero toys. It genuinely perked him up. He got out of bed on his own to play, which is not something we have been able to say a lot lately. Rachel also signed him up for some time in the hospital playroom, which had a huge interactive display with games and musical instruments. He wore himself out pretty fast, but the smiles were real.

Even in the middle of a day that started scary, Eli reminded us what he is made of. We are so grateful for every moment like that.

Thank you for every prayer. They are carrying us.

🩶🦁🧠 #RoaringForEli