Between 6:30am and 7:00am I turn off his nightly feed.
8:30am I start his nebulizer treatment with Xopenex and change his diaper and give his morning meds. This treatment usually lasts 20 minutes. While that is going I start his bath.
9:00ish I bathe Micah. Once clean I dry him off and put lotion on him every day because he doesn’t do a lot of moving 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. Next is his vest treatment which lasts about 10 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. Usually he does well off his Bipap for a few hours.
10:00am I start his first feed of the day and position him on his tummy. I put his ankle braces on and his wrist braces on.
11:00am I turn his feed off and take his wrist brace off. Usually I put his Bipap on and he falls asleep around 11- 12.
1:00pm I reposition him and start feed #2.
2:00pm I turn off feed and give his med. This is play time off his Bipap.
4:00pm I start feed #3 and put his Bipap on.
5:00pm I turn his feed off and usually he takes his second nap.
7:00pm he gets feed #4.
8:00pm I turn his feed off .
8:30pm I start his nebulizer treatment, vest treatment, and cought assist with suction inbetween. Next I give his meds and we play for a little while because his Bipap is off after the cough assist treatment.
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.
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.
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