Monday, May 11, 2015

A Day in the Life

My dear friend Sarah has been in Boston for the past week keeping me company and helping me with the day-to-day tasks.  I asked her to do me a favor one day.  I asked Sarah to document what I do in a 24 hour period with Emma in the hospital.  You see, I get asked, rather frequently, what I do to occupy my time in the is pictorial/brief description of what Emma's day looks like.

12:04am: Beeping medicine pumps.  I hate the beeping pumps. Now Emma is awake and can't get settled.

2:45am: Feeding pump is beeping which wakes Emma up again.

7:30am: Rise and Shine Boston.  Emma is waking up and it is my turn to get ready for the busy day ahead.

8:05am: Sarah arrived with coffee

8:15am: Doctor rounds with around 15 different medical professionals

8:40am: 6 doctors come in room to examine Emma

8:45am: I finally get to drink my coffee ;)

8:46am: Just kidding about the coffee....3 nurses enter room to flush Emma's PD drain and change PICC and PD dressing.

9:07am: Diaper change/weigh diaper

9:13am: Begin administering 11 medications

9:15am: Fondaparinux injection

9:36am: Sarah microwaved my coffee ;)

9:42am: Call from Scott....I updated him on the plans for the day

9:51am: Skype with Grampa

9:53am: Nurse refills formula bag and increases Emma's rate.

9:57am: CODE BROWN: Change clothes and bed dressings.

10:08am: Dr. Marx (cardiologist) stops by for a  visit and to check in

10:14am: Outfit #2 for the day

10:15am: Finally time for my breakfast

10:17am: Have nurse bring in and clean play mat for Emma's

10:30am: Machines start beeping again!

10:37am: Administer IV antibiotic

10:42am: Physical Therapy: AFO (leg brace) lift is too tall, so we will have to get that assessed.  Emma does tummy time for the first time in six months (since her open heart surgeries)

11:20am: Meeting with nurses concerning a red area around Emma's PICC line.

11:35am: ART Cart

12:04pm: Oral care

12:12pm: Vented G-tube found pink feathers....hmmmm
                 Changed diaper
                 Measured abdominal girth

12:19pm: Nutritionist comes in and discusses that Emma is getting decent enough nutrition to turn off the lipids (fats that go straight into the veins)

12:30pm: Moved Emma to treatment room to draw labs, change PICC line dressing, cap change, and turn off lipids

1:13pm: Back in Emma's room

1:20pm: Well deserved naptime for Miss Emma

1:25pm: Make lunch and go to garden for lunch with Sarah

2:40pm: Check on Miss Priss and change into running clothes

3:20pm: Miss Priss wakes up from nap

3:30pm: Child life specialist comes in to play with Emma

3:59pm: Put on AFOs

4:04pm: Nurse came in and administered meds.

4:13: Heart failure doctor visits

4:17pm: Code alarm sounds in another room.  Doctors and nurses leave room in a hurry.  Luckily, it was a false alarm.

4:30pm: Removed TPA from PICC line. Blood draw attempt was successful.

4:36pm: Antibiotic administered 

5:17pm: Line and Cap change for PICC lines

5:35pm: Emma in standing frame.  I work with her on flash cards, block stacking, bubbles, ball throwing, and following directions. 

6:25pm: Get Emma out of stander

6:30pm: Sarah and I eat dinner in the room.

7:14pm: Start bathtime routine.

8:00pm: Get Emma's weight

8:15pm: Breathing treatment 

8:29pm: Skype with Grampa and Gramma

9:00pm: Brush Teeth and administer night time meds

9:05pm: Sing songs, read story, say prayers, bed

10:33pm: I attempt sleep

12:15am: Emma stirs during assessment but goes to sleep without my intervention 

3:12am: Emma wakes up crying..unsure why.  I changed her diaper and vented her g-tube.  She eventually went back to sleep.

So there you have it!  24 hours in the life of Emma in the hospital.  Big thanks to Sarah for taking pics and documenting our day.  

Emma is improving daily.   She is officially off TPN and lipids and getting all of her formula through her g-tube into her stomach.  Emma is off IV diuretics and getting oral diuretics to pull off excess fluid.  

Tomorrow will be a big day because we will shut off one of the meds that helps support her cardiac output.  The hope is that her body/heart can function decently without it. 

One of Emma's other big issues is her PD drain.  Emma is still putting out a decent amount out of her drain each day.  We will need to try clamping it at some point.

Thank you for the continued prayers! We continue on this uncertain journey and try to get Emma back to some sort of normal in the meantime.

God is good!  All the time!  God is good!  


  1. I was worn out just reading about your "routine!" But the smile on your face. In the last pic puts it all in perspective. Prayers of continued strength for you, your family and especially your sweet little E! Your Praise and Hsrmony friends from Texas will keep you lifted up!

  2. Kisses for Miss Priss and prayers for you both!