Oh my goodness!!

"the little darling"

"the little darling"

I just checked my calendar.  That’s where I put all of the stickers from the g-tube box that has the serial numbers on it.  I also note each day that I have to change his tube.  SIX g-tubes in the month of July!!!  Yes, SIX!!  That’s insane!  And that’s with all of the measures in place that we could come up with to keep him from pulling them out…overalls during the day, onesies and shirts pinned to shorts at night.  During the day has been pretty good.  But night times are a pain in the neck now!  I can’t put him to bed in overalls.  Not with all of the metal buttons and buckles.  That would be very uncomfortable I would think.  The onesies are useless.  He pulls the tube out anyway, but at least it doesn’t get lost.  And he can’t very well chew on it when it’s stuck inside his clothes, right?!  UGH!!!  All suggestions welcome!  There’s got to be something!

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3 Comments (+add yours?)

  1. Rhonda
    Aug 01, 2008 @ 16:30:19

    Beth,

    I wish I could come up with an idea. My mom used to make jumpsuits for a little girl that was in a nursing home. They were one piece and they had snaps in the back. Since the overalls are working during the day, this might work for night. Does he get hot? If they were made out of some type of heavier material (heavier than a onsie) maybe he couldn’t get it out??? Do you know anyone that sews? I can sew a button on but that’s about the extent of my seamstress skills. Maybe someone can take this idea one step further. Good luck. Have a good weekend.

    Reply

  2. Heidi
    Aug 02, 2008 @ 01:38:17

    Hi. I’ve found my way here through a variety of other CdLS blogs. My baby boy has CdLS and we are a CHOP family. I actually think that I might have heard about your family while we were in-house at CHOP in the NICU.

    Anyhow, it is nice to meet you and I’ve added you to my bloglines so I can keep up with your story. I have ZERO advice as I know NOTHING compared with the other CdLS parents, but there must be a solution.

    Hope you have a nice weekend.

    Reply

  3. Karen
    Aug 03, 2008 @ 14:25:23

    Beth, how frustrating! Is Andrew on continuous feeds at night?
    I don’t have any great ideas…maybe using an ace wrap around his belly where the button is?

    Reply

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