24 May 2011

Our Schedule

You'd think you'd be bored at the hospital all day if you're living here for a month but ironically that is not the case.  This is likely because I have two children who are with me most of the day and because we have family in town.  But I am surprised how fast the days go by.

I thought I'd list out Bennett's schedule to offer a perspective of what we do all day...
MORNING TIME: Bennett usually wakes up anywhere between 6AM and 8AM.  At home, he usually sleeps until 8AM but here, it is harder.  Nurses come in and out of our hospital room all night and in the early hours of the morning making it much harder to sleep in.  I usually get up when Bennett won't let me sleep any longer.  (He can see me in the room so he knows I'm there.  I usually get my shower and get dressed before taking him down from his crib.  Once we're both dressed, I'll open the door as a signal to the nurses we are ready for them to come in.

VITALS and WEIGH IN: Our nurse, who usually comes on duty around 7AM will come into our room to take Bennett's blood pressure and his temperature.  On Monday, Wednesday and Fridays the hospital tech will weigh Bennett in on his diaper.  This weigh-in is important for the team to know how the Feeding Therapy is working.

FEEDING THERAPY #1 (breakfast), 8:30AM:  At this time, Ebby, our speech therapist and "Feeder" arrives at our hospital door to pick Bennett up.  The nurse usually provides me his enzymes right before Ebby arrives.  I make sure Bennett has his favorite stuffed animal and is wearing a bib before he goes.  Bennett usually cries when Ebby takes him but that doesn't last long.  Feeding therapy takes 25 minutes.  While Bennett is gone, I eat breakfast (usually a nutrigrain bar or donut) since I can't eat in front of Bennett.  There is no cafeteria at this hospital so I have to find food on my own.

SPEECH THERAPY, 9:00AM: Ebby is not only Bennett's "Feeder" but his Speech Therapist.  So, she usually takes him to another room downstairs and works with him on specific speech therapy goals.  Ebby returns him to our hospital room at 9:30AM.

OCCUPATIONAL THERAPY, 9:30AM: Bennett's OT comes to pick him up from our hospital room. They go downstairs into the therapy room to work.

PLAYTIME, 10:00AM: We typically play in the room at this time.

FEEDING THERAPY #2 (lunch), 11:30AM: Ebby or another "feeder" arrives at our door to pick up Bennett.  The "feeder" brings Bennett back 30 minutes later.

NAP, 12PM: Bennett goes down for a nap around this time.  This is also the time when Brian, Oliver and I often grab lunch out and do our "adventures".  The nurses watch after him.  Bennett also gets a tube feeding during this time.

OUR LUNCH, 12:00PM:  This is when Brian, Oliver and I try to get lunch.  We will sometimes get free lunch at the Ronald McDonald House when we have time to drive over.  Lunch at the Ronald McDonald House is from 11:30-12:30.

FEEDING THERAPY #3 (snack), 2:30PM: Ebby or another "Feeder" picks up Bennett to eat.

PLAYTIME, 3:00PM: The boys like to play outside on the playground or hospital courtyard during this time.

FEEDING THERAPY #4 (dinner), 4:30PM:  This is an early dinner time but since the feeders are going from 4:30-6:30pm feeding dinner to the kids, this is what time he eats.  Again, a "Feeder" picks him up from the room and returns him 30 minutes later.

PLAYROOM, 5:30PM: The Playroom is open from 5:30-6:30pm and usually offers an organized activity for the kids.

OUR DINNER, 6:30PM: This is the time with Brian, Oliver and I usually eat dinner.  We try to eat leftovers from meals from days earlier since places to eat are scarce downtown and often difficult to get to.

VEST TIME/RETURNING TO RMH, 7:00PM: This is the time when we usually do Bennett's physiochest therapy (aka The Vest).  This is also the time when Oliver and Brian return home to get Oliver in the bed.

MEDICINES AND PJ TIME, 7:30PM: Thirty minutes before bedtime becomes a busy time.  The night nurse comes on shift and brings us his medicine.  I change Bennett into his PJs and get him ready for bed.

BEDTIME FOR BENNETT, 8:00PM: Bennett goes to sleep in a dark room at 8PM, usually without a fight.  He is hooked up to his tube feeding for the evening.  I often leave the room to allow him to fall asleep.  I usually slip back in the room 15-30 minutes later when I sit on my bed and watch TV quietly or work on the computer.

BEDTIME FOR MOM, 11:30PM: This is usually when I turn off my lights...if I can force myself to end my quiet time in order to rest up for a busy day tomorrow.

1 comment :

  1. Lol, very cute pictures. I love Bennett's "Cheese Smile". Wow ... busy day! You might have answered this before, but as of late, my memory is terrible. Why can't you eat in front of Bennett? Does this schedule continue, or do they eventually bring you into the "feeding time"?


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