It's hard to believe we have been home for five days.
Five beautiful, glorious, messy days.
It's been preetty crazy around here.
I thought that if I just did everything when it needed to happen -- in terms of administering medicine, trach care, feedings, physical therapy, etc.
But I was wrong. I needed to create a set-in-stone schedule and map out everything, including my own meal times, laundry days, cleaning time, sleeping time.
We found while we were in the hospital that her Keppra was best administered in the evening, before bed, with the Prednisone. In the morning she needs to take Acetylcholine, Zyrtec, Prozac, and Metolazone. She should be having five small meals a day and taking enzymes half an hour before each meal. She needs 300 calories at each meal and whatever she doesn't eat orally has to go through the tube. And she will also have an overnight feed of 10 oz of high-calorie prescription formula. Oh yeah, and every day she needs to have an injection of HGH. All of this needs to be better coordinated with my life and the nap that Maisie really needs to take every day and all the regular hygiene and playtime and therapy stuff.
Okay, so:
8:00 -- Wake up, change overnight diaper, administer enzymes through the tube. Trach care, suctioning, tube change if necessary. Get dressed, check the tube site and change button buddy, brush hair & teeth.
8:30 -- Breakfast! Banana, pear, oatmeal, pancakes, eggs, bacon, etc; all fortified with powdered milk, butter, whipped cream, etc.
9:30 -- Administer Acetylcholine, Zyrtec, Prozac, and Metolazone. Whatever she didn't eat at breakfast goes through the tube as formula.
10:00 -- Therapy. Monday, Wednesday, and Friday Maisie has physical therapy. Tuesday and Thursday she has speech therapy.
12:00 -- Enzymes through the tube
12:30 -- Lunchtime! Chicken nuggets, yogurt, avocado, graham crackers and peanut butter, peanut butter and banana sandwich, hummus, any kind of beans, etc. Once again I fortify whatever I can with powdered milk, butter, whatever works.
1:30 -- HGH injection and nap time. While Maisie naps, I get housework done. Laundry, prepping meds and feeds, reading, cleaning, etc. If she stays asleep for an hour and a half, I can check off maybe half of my to-do list.
2:30-3:00 -- When Maisie wakes up I set her up in the living room with toys, books, and Doc McStuffins, PawPatrol, Bob the Builder, or one of her favorite movies (Finding Nemo, Frozen, Tangled, Wreck-It Ralph). This is her time.
4:00 -- More therapy. If it was a speech therapy day, we do as much PT as possible, including stander hour and fifteen minutes in the gait trainer. If it was a PT day, I do what speech therapy I can on my own at this time.
5:00 -- Enzymes!
5:30 -- Dinner time!
7:00 -- A little Daddy play time and then we start the bedtime process. Prednisone and Keppra through the tube, bath, teeth brushing, jammies, set up the overnight feed, and then several hundred books before she conks out.
9:00 -- Maisie is usually asleep by now and I'm exhausted and not far behind her.
So this is a pretty good schedule, except for the fact that she also has a trach. And that usually throws a monkey wrench in our days. And once a week we return to the hospital for plasmapheresis, and once every three weeks that hospital trip includes IVIg.
Whew! I won't pretend it wasn't easier having her at the hospital, having someone else worry about her, but it's worth it to be home.
