A day in the life of Emma

Ok everyone always says there must be so much work involved in taking care of Emma. Really its not that bad. So I thought I would post a sample of what her day is normally like. Things in red happen at that certain time. Things in blue happen at around that time everyday. There are things like suctioning her that pretty much happens when she needs it but I have also included that in blue, some days she requires more mouth and nose suctioning or trach suctioning but this is a rough look at how a typical day goes. Warning this post will be rather long!!

9 am --Mommy gives me my phenobarbital and starts my feeding pump. I am usually still asleep.
10am--Mommy turns my feeding off and flushes my mickey button with water.
1030--I am drooling pretty good so someone (mom or dad) has to suction my mouth.
11am--I get to get in my chair for a while, I like sitting up. My diaper also gets changed. I am usually awake by now.
12pm-My vitamins are given to me and I get my food started again.
1pm--My feeding pump is turned off since I am all done eating and I get my flush of water, I also have to have my mouth suctioned again I have drooled all over my "spit rag" that I have by my face. Mom changes out my bedding.
2pm--I get put back in my bed, diaper checked again. I am put on my side or back. I am probably naping by now.
3pm--My feeding gets started again. Yummy Yummy Better suction my mouth again!
4pm--I get my food finished up and flushed, then get turned to a different position in my bed. My mouth is drooling again suction me!
5pm--Diaper checked and I am back in my chair. How fun. I like to try to watch TV, sometimes I am still sleeping and sometimes I am awake. I sometimes get my bath now, although I don't get a bath in the big bath every day.
6pm--Food time again, start up my feeding pump!!
7pm--Feeding is over and I get flushed. My mouth is leaking so suction my mouth now.
8pm-I get put back in my bed usually and get my trach suctioned around this time. As I get a little icky. My mouth gets suctioned too, diaper changed, my bedding was switched before I was put back in bed. I also get my necked cleaned and my trach ties changed. I get my PT done. I usually like it. This hour is Mommy's busiest its right after Ella goes to sleep.
9pm--My nurses get here, I get my phenobarbital again, my feeding started, my vitals checked. I get lots of love from my nurse.
10pm--my feeding is done, I get flushed and I get turned to a new position, Suction my mouth again
11pm--Mom is usually busy or sleeping and the Nurses play with me or watch me or whatever they want to do with me. Suction my mouth probably
12am--Feeding time again, suction my mouth, change my bedding probably.
1am--Food is over, I get flushed and the nurse turns me to a new spot in my bed and change my diaper
2am--God only knows what I do at this hour, my mom is normally sleeping, but the nurses probably suction my mouth and trach for the 2nd time today.
3am--MORE FOOD!!! Suction of the mouth Nurse turns me again
4am--Food is done flush me, I am awake most likely and have been for most of the night.
5am--The nurse probably turns me again, and I am just falling asleep for a while.
6am--Suction my mouth and start my food. Diaper me please
7am--Food is done, some nights my nurses sponge bath me.
8am--Turn me again if you haven't already and watch me sleep Suction my drooling mouth
9am--My day starts all over again
Emma also wears different splints for several hours a day, I didn't include that in her basic story there but they go on and off every 3 hours different ones. She also gets in her stander for a little bit each day but it just depends on when we can find the time to do it when she is awake and the other two kids aren't running crazy.
Some days are different than others, but the feedings all happen at the same time, some days we suction her trach like 4 or 5 times, sometimes not at all. What is hard is to do all this and to still manage the other kids and dinner and errands. Her feedings take about 1 min to start and her diapers well you know how long that takes, most of the time all her stuff is pretty quick with the exception of all the stuff I do around 8pm. Oh and how could I forget the 10 times or so a day you have to dump the water from her venitlator tubing, and the alarms that beep about 10 times or so a day.