We didn't know why every glance at Miss Maisie made them so happy.
They weren't allowed to tell us.
We figured it out at rounds when the ENT told us that Maisie will be discharged today.
I couldn't believe it.
The nurses were basically partying.
There were cupcakes.
I am not kidding. Apparently the nurses asked for a bit of advanced warning so they could bring cupcakes and have a little celebration.
Maisie's is the only bed that has remained occupied for the past two and a half months. Every other patient has come and gone, but Maisie has been here.
I mean, this has been a long stay. And now -- well, the day after tomorrow -- it's over. We're going home. I have been living at the hospital as sure as Maisie has been. I have been out and home a few times, but for the most part I have needed to be here. She's been in pain, afraid, in surgery, or in some kind of arrest or distress for nearly our whole stay. And when she wasn't sick, I was training to give Maisie injections, to suction, change, and monitor her trach, and to use all the new equipment that is in our home, waiting for Maisie.
Over the past few days Jeff and I were able to get the house ready for Maisie. She has been in the first floor bedroom and even though it's really a very small room, we decided that she should stay there. The stationary vent will sit by the bed along with the feeding pole. and above it is a little shelf for the apnea, pulse-ox, and heart rate monitors. She has a nice new storage hutch with lots of shelves and cabinets that we have moved all of her new medical stuff into. The emergency oxygen tank and cannula are tucked into her closet, and on the flat top of the hutch we set up a trach-care station with a place for her to sit/lie while her trach is taken care of. The only open floor space is the three-foot wide path down the middle of the room, but that's okay because her playing can be done in the living room.
The great thing about having her vent downstairs is that her circuit (the tubing from the trach to the vent and back to the trach) can reach from the stationary vent almost anywhere in the kitchen, bathroom, and living room. This means that her stroller can remain pre-loaded with the portable vent and humidifier, the secondary apnea/heart rate/pulse ox monitors, and some emergency supplies and I don't have to pack up every time we want to go outside.
Most of her feeding equipment is in the kitchen. She will get her feeds while Jeff and I eat our meals, so that hopefully she makes the association between eating and the pump and the time and feeling full. Her physical therapy equipment is all in the living room, mostly put away and organized in the cabinets and shelves along the wall. Her stander and gait trainer are tucked behind the couch.
Maisie is coming home with a lot of support equipment, and there's a lot that I need to do. She is by no means "healthy." Aside from her regular g-tube feedings and physical therapy that were happening before the hospitalization, Maisie now has a huge list of daily/weekly/monthly needs.
Every day I will have to clean the trach site, and once a week the tube will have to be changed. The trach needs to be suctioned to get the mucous out (you and I would just cough secretions out, but this doesn't work with a trach.) She will receive daily HGH injections. Once every three weeks we will return to NJ Children's Hospital where Maisie will be weighed and measured precisely, and she will recieve IVIg. Once a week we'll go back for plasmapheresis.
The physical therapist will be by three times a week, but Maisie and I will do our own physical therapy every day -- besides an hour of stander time, she will be in the gait trainer for at least fifteen minutes every day, and she will have lots of little therapy activities throughout her day.
We have a long list of goals for Maisie, things we want to see her accomplish by her sixth birthday. I will blog more about that later, but right now I have discharge things to do!!
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