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Bennett's Schedule

Sunday, November 8, 2009

Well, we're surviving at the Gamel household after our first full night at home with Bennett.  We're on day 1 of doing all of this ourselves.

It took only 3 late night phone calls to the hospital.  The ileostomy bag busted open (poop everywhere) only twice and we've had a similar g-tube (the tube that we use to feed him in his tummy what he doesn't eat by mouth) mess only four times. So, we think we're managing pretty well. 

Bennett's schedule is a doozy (doo·zy \ˈdü-zē\ noun: an extraordinary one of its kind; something that is difficult or daunting), to say the least.  (...of course, we wouldn't trade him back for the NICU for anything.)

Breck's mom, who is in town, joked that by the time Bennett gets his "Humpty Dumpty" surgery, we will all just be relieved that "all he has" is Cystic Fibrosis.  Which is ironically true.  Guess everything is relative.

Getting more than about 2.5 hours of sleep or time to do anything other than care for Bennett is difficult but we hope that we will get in some type of rhythm...eventually.

In order to better illustrate how difficult caring for Bennett is right now, here is our schedule:

8am
Put on new Ileostomy Bag
Change Diaper
Clean G-Tube
Clean Umbilical Cord
Give ADEKs Vitamins through G-tube
Give Prevacid

8:30am
Give Albuterol through Nebulizer
Give Percussion/Chest Physical Therapy

9am
Change Diaper
Clean out ileostomy tube
Give Enzymes
Feed

12pm
Change Diaper
Clean out ileostomy tube
Give Enzymes
Feed

2:30pm
Give Albuterol through Nebulizer
Give Percussion/Chest Physical Therapy

3pm
Change Diaper
Clean out ileostomy tube
Give Enzymes
Feed

6pm
Change Diaper
Clean out ileostomy tube
Give Enzymes
Feed

8:30pm
Give Albuterol through Nebulizer
Give Percussion/Chest Physical Therapy

9pm
Change Diaper
Clean out ileostomy tube
Give Enzymes
Feed

11pm
Change Diaper
Clean out ileostomy tube
Give Enzymes
Hook up Continuous feeding

2am
Change Diaper
Clean out ileostomy tube

2:30am
Give Albuterol through Nebulizer
Give Percussion/Chest Physical Therapy

5am
Change Diaper
Clean out ileostomy tube

2 Responses to “Bennett's Schedule”

  1. Hey Breck, Sounds like you're doing a good job organizing everything to me! I know your mom being there is a tremendous comfort! Your schedule looks very tedious, but I know you'd rather be doing it, than the nurses. Tell your mom I said hello. Give the boys a big hug for me. I know Oliver will steadily learn to be a great big help to you. He'll have Bennett's attention before long. Praying for you always! Ms.Ann

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  2. Whew! I'm worn out just looking at that schedule. I'm so glad your mom is there to help you! If you need reinforcements, let me know and I'll be on the next plane there!

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