Between 6:30am and 7:00am I turn off his nightly feed.
At 8:30am I start his nebulizer treatment with Xopenex or Albuterol ( Xopenex works better but is not covered by our insurance so its expensive) and change his diaper and give his morning meds. Micah gets a muscle protein called Carnitor. This treatment usually lasts 20 minutes. Next is his vest treatment which lasts about 15 minutes, some suction and then his cough assist treatment followed by a little more suction. All of these things are to help loosen and move the junk in his lungs to a place where we can get it out either by suction or cough assist. While that is going I start his bath.
At 9:00ish I bathe Micah. This is a great time for Micah to move his arms and legs as much as he can, the water gives him the ability to defy gravity for a period of time and he loves it. Once clean I dry him off and put lotion on him every day because he doesn’t do a lot of moving out of the bath I like to make sure all of his skin is in good shape. Then I diaper him and put baby powder in his wrists and behind his knees and his ankles and sometimes his neck and dress him. Usually he does well off his Bipap for an hour or so.
At 10:00am I usually put his Bipap on and start his first feed of the day and position him on his side. I put his ankle braces on.
At 11:00am I turn his feed off. Around this time I start his physical therapy and do his range of motion.
At 1:00pm I reposition him and start feed #2 and if I am lucky he takes his nap.
At 2:00pm I turn off feed and give him a breathing treatment if he needs it.
At 4:00pm I start feed #3.
At 5:00pm I turn his feed off.
At 7:00pm he gets feed #4.
At 8:00pm I turn his feed off.
At 8:30pm I start his nebulizer treatment, vest treatment, and cough assist with suction in between. Next I give his meds, Micah gets a muscle protein called Carnitor, a multi vitamin with iron and Coenzyme Q10, and we play for a little while because his Bipap is off after the cough assist treatment.
At 9:30ish Bed time. I hook up his Bipap and his nightly feed. Turn on his movie for a little while and put his pulse oximeter on his toe.
At 10:00pm I turn off the movie and we all go to be. Usually Micah wakes up 2-3 times a night just to change his position and he goes right back to sleep.
