May 24th — Hospital Day 6

Today was one of the better days we have had in a while, and we needed it.

Eli's swelling has gone down a lot. He is starting to look like himself again, and more importantly he is starting to act like himself again. Neurosurgery came by to remove his bandage and he did really well with a little help from some Ativan. We think his growing comfort with Rachel has helped open him up to other staff too, which is a good thing to watch happen.

The biggest highlight of the day was getting a four-hour pass to leave the hospital. We took Eli to the Cincinnati Museum to see their LEGO Jurassic World exhibit, and he thought it was really cool. Just being somewhere different, doing something normal, meant everything. We came back and hit the playroom one more time before settling in for the night.

On the medical side, they made some changes to his antibiotics today. The three he was on were swapped out for two new ones that are better matched to his specific strain of MRSA. One of those new medications unfortunately interacts with the seizure medicine he was on, so we had to switch him to Keppra. We have some concerns about Keppra because it is known to make kids irritable, but given the alternative of a drug interaction, it is the right call. We will manage whatever comes with it.

They also started him on Atarax to help with his anxiety. We gave him his first dose tonight and it seemed to settle him down a little and helped him get a better night of sleep. That alone is a win.

We are hanging in there. Thank you for continuing to pray for our boy and for us. The support we have felt through all of this has been overwhelming in the best way.

🩶🦁🧠 #RoaringForEli