It’s Tuesday. When I had the wheels spinning to start a blog, I wanted to write about our life & living normally with a trach child. So Trach Tuesday was born.

Before our sweet girl arrived 15 weeks early (that’s a story for another day), I worked full time as a lending assistant. Now, 14 months later, my life is vastly different. Gone are the days of running errands after work or on my lunch hour. I don’t have a lunch hour anymore.

Today our day looked like this:

• 5:30 am – Husband leaves for work
• 6:15 am – Our night nurse wakes Mae & starts her morning respiratory treatments.
• 6:30 – I wake up, do my morning stuff & get the end of shift report.
• 7 – Our night nurse leaves. I get Mae’s feeding & morning meds ready to go.
• 7:30 – Feed Mae via her G-Tube and catch the Today Show.
• 8 – Our day nurse arrived! (We have day nursing or respite care 2-3 days a week). Mae took a 30 minute nap.
• 8:30 – Mae & her nurse play, work on therapy. I go lay down.
• 10:30 – Mae gets a spa day (bath, hair, nail & trach ties changed. I take a quick shower.
• 11 – Mae lays down for a 45 minute nap. Her nurse & I eat lunch.
• 11:30 – Mae is fed while sleeping.
• 12:15 – Respiratory treatment for Mae (Grandma calls this her peace pipe)
• 12:30 – We gather everything needs to take Mae out of the house. This includes a go bag (trach emergency), suction machine, oxygen tank, pulse ox machine, normal diaper bag and stroller.
• 1 – Therapy sessions for Mae. This week she moved to two times a week from three. She has three, 30 minute sessions. Physical, Occupational & Feeding therapists work on a a variety of things with Mae to help her development.
• 2:30 – Head home, Mae takes a 30 minute nap. Today we moved her 3:30 Feeding to 2:45.
• 3:30 – In Home therapy for Mae. This is through the early development network with our public schools.
• 4 – Our day nurse leaves.
• 4:30 – Therapists leave, I try to get Mae to take a short nap since she was going all her ‘I’m tired’ signals. No such luck today.
• 5 – Husband arrives home. I get dinner going while he entertains Mae.
• 5:45 – Dinner
• 6:15 – Start getting Mae ready for bed. (A little early tonight since we can tell she is exhausted) Mae gets more respiratory treatments.
• 7 – Dinner for Mae. She receives all meals and medicine through her G- Tube.
• 7:30 – Mae’s bedtime tonight! We read a story and move her into her room. We call moving her the Mae Train since we have a cart that holds her suction & pulse ox, trach supplies, respiratory treatments and diapers that moves with her from room to room.
• 8 – I start a load of laundry, clean the kitchen & make lunch for the next day.
• 8:30 – Husband goes to bed, he gets up at 4:30.
• 11 – Our night nurse arrives. I give the daily report, letting them know of anything special to do in the morning or during the night. During their shift, they make sure Mae’s pulse ox numbers stay where they need to be, give feedings and respiratory treatments at 11:30 & 3:30, clean equipment & make formula for the next day.
• 11:30 – I get in bed, usually falling asleep around 12:15.

And that’s our day in a nutshell. Throughout the day, we suction Mae to remove any secretions.