Things are currently very busy here, as we are preparing for discharge this coming up week.
Life will be very different at home now, especially with the current world state which makes it feel like there is a lot more to figure out and prep. Equipment, follow up, prepping our house, training, paperwork and SO much more, all while still making sure we still get the most out of our last week here. It’s definitely a lot, but it’s worth it!
His entire team – here and locally – has been doing an incredible job with everything which puts us into a solid mix of SO ready to go home and so anxious to start this next chapter. There are many (mixed) feelings for sure but home will be SO good to be back in our own environment.
Easter came and went this week. Between not being home, all this social distancing/not going out stuff happening, it flew by just like any other day. We did a little “easter egg hunt”. Ethan got a little goodie bag (and mommy gets to eat the chocolate haha) and we snapped a cute photo with the backdrop one of the playroom workers made.
Most of Sunday was quite difficult for Ethan. He went from relatively playful to extremely tired, quite suddenly. We chalked it up to the rough night we had as he didn’t sleep well. He took a 3-hour nap but still seemed extremely tired, spaced out, having staring seizures and just overall really off. Shortly after 5, he had a bigger seizure that required rescue meds – which quickly kicked in and stopped the seizure. As expected, he slept some more.
Once he slept off the rescue meds, Ethan was a completely different kid than he had been all day! Awake, alert and ready to play! It was wonderful to see, but also makes us wonder if he was having seizure activity throughout the day we weren’t picking up on/seeing 😓
He was stable during the evening so we’ll check in with the doctor tomorrow.
There’s still many questions we need to get answered and things we need to get figured out before we head home, but we’re getting there. I don’t think we’ll be 100% ready as things are constantly changing, but we’re trying to get as close to it as possible.