Charlie had surgery today to place a central line and g tube. While sedated, he also had a hearing test. We know that chemo side effects could impact his hearing, so he will be having frequent tests to monitor that. Today’s test was normal as expected.
He also had an EEG this morning because he is at a slightly elevated risk for seizures just because of the tumor and metabolic disease. Those results were normal, too. Hallelujah.
Next up: introduce the bottle again, and receive education on central line care and using a g tube. Friday, he will have a sedated MRI. Then, the hope is that we will come home for a couple of days before we start chemo next week.
One day at a time.
We love our medical team. One of his genetics providers gifted him a book yesteday called “Be Brave Little One”. Two of his previous NICU nurses wear his footprint on their badges. A slew of newfound friends stalk his chart to know when we’re admitted so they can visit. This is both a horrible and an absolutely wonderful place to be. 💙