Our feelings are surprisingly bittersweet.
I'm excited to go home. Living in a very cramped hospital room for the past 6 days has been rough. We haven't gotten much sleep. We miss our family, friends and regular daily life.
But I'm nervous. I'm nervous to go home. I'm nervous to be responsible for all of these new treatments that Ella will need on a daily basis. I'm nervous about how I will find the time to add these treatments to our already jam-packed days.
For now, this is what we'll be adding to our daily routine:
- NG tube feedings 4 times per day (an hour for each session, not including set up/clean up)
- Vest treatments 4 times per day (20-25 minutes for each session)
- Cough assist and suction 4 times per day (15-20 minutes for each session)
- Periodic pulse-ox checks throughout the day
- BiPAP setup at bedtime every night (and possible adjustments/comfort throughout the night)
The only change once Ella is completely healthy (in 2 to 3 weeks) is that her Vest and cough assist treatments will only be once or twice each day, rather than four times.
We're also going to have to rearrange some things in our house. For one, we'll have to make room for all of her new equipment. Most of it will go on the first floor (except for the BiPAP, which will go in Ella's room).
We're going to have to figure out an organization system for all of her supplies. Not only will we have the equipment, but we will have all the disposable supplies that go with them. Tubing, tape, syringes, pads, masks and bags to name a few. And I'm talking a month's supply of these things, not just a handful. We'll have to figure out what will work best for our family and then start organizing (which, on the plus side, is something I LOVE to do). Dr. Prestridge said we should definitely invest in a label maker :)
Currently, Ava and Ella share a room. Ava is in a twin bed and Ella is in a crib. We're going to be switching Ella to a full sized bed so that we have easier access to her and her equipment and also so we can lie with her if we need to (the other night I slept with Ella IN her crib...I love our Squishy, but that's something I'd rather not do again if I can help it).
This means Ava and Henry will go back to sharing a room (for now anyway). We'll turn their twins into bunk beds, which hopefully will be fun and exciting for them :) And it will be better for Ella to have her own room anyway, since her machines will not always be quiet when she sleeps.
So while we're happy to be going home, we're a little apprehensive. We're leaving the safety of the hospital and entering a challenging world of daily medical intervention.
It's a little scary.
