A day with Logan

My mind runs a million miles a minute most of the day. Trying to work to make a living, and schedule our lives around doctors appointments and appointments for home visits, do house work, cook, and make sure I spend quality time with Logan and Brian, I feel like I need two of me. Things can be very stressful at times, but Brian and I are thankful we have great jobs, and bosses that care. Without that, we really would be lost. A day with Logan is a full time job...it's nothing like taking care of "healthy" child. It's more like taking care of a child that is sick all the time. Although yes, Logan has a genetic disease, but he's pretty stable, but still considered sick.
I just wanted to walk everyone through a day with Logan. I'm not asking for a pity party from anyone, but I just want everyone to know the real reality of taking care of Logan.

7am- Breathing treatment, Xoponex, and chest PT
7:30- Bath in the tub with PMV or thermovent on, or sponge bath with PMV on. Gtube & trach care done after bath.
8-9- Move Logan to the living room and suction a lot because of the breathing treatments.
9am- First bolus feeding & meds given, oral care done also
9:30= Flush gtube and flush feeding bag
10am- More chest PT & gets down on the floor for exercises
10:30- PT on Wednesday for 1 hour- Working on head control and supporting the spine
11:30- OT on Monday's for 1 hour
12-1pm- Usually napping
1pm- Bolus feeding
1:30pm- Chest PT to clear secretions
2pm- Usually playing
4pm- Bolus feeding & flush 30 min. later
5pm- Breathing treatment & chest PT before bedtime
6-8pm- Playing, watching TV, usually asleep by 8pm
8pm- Bolus feeding & meds given. Flush 30 min later
10-pm- Put in crib, diaper changed, humidifier filled up, and everything restocked.
11pm- Bolus feeding & flushed 30 min. later, rotated from sides to back
1am- Breathing treatment and Chest PT given, trach care and gtube care done
2am- Bolus feeding, and flush 30 min. later, rotated after feeding
4am- Breathing treatment & Chest PT given
5am- Bolus feeding & flush 30 min. later

So as you can see, unless he is sleeping, Logan is a full time job, Thank God for our incredible nurses that help us care for Logan. There would be no way that I could do this everyday and work.


Logan is doing pretty well after his hospitalization. He will be finished with antibiotics tomorrow, and I can't wait. Poor thing has had a upset stomach ever since he has been taking it. We are going to UNC on Thursday for Logan's ultrasound, meeting with the surgeon, and his swallow study. I can't wait to finally see what Logan is capable of doing.
Swallowing is such a task when he is on the vent, so we will see.