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Just when we thought we were going home…

August 6, 2009

After another restless night of sleep we woke this morning looking forward to going home and sleeping in our own beds.  Plans were being made for discharge when our pediatrician came in and said “there’s been a change of plans”.  Lucy’s culture of the inside of her stoma grew positive for strep bacteria.  We are now going to start her on a course of IV antibiotics .  Our pediatrician is consulting with the infectious disease team here to see what antibiotic they recommend and how long they recommend her to be on the IV antibiotics before we can switch to oral antibiotics(via PEG tube for Lucy) and go home. 

Surgery came in at noon and took sliver nitrate to the tissue that was coming out from Lucy’s site, yikes was that every painful!  That procedure was the last straw for Lucy, she announced loud and clear that she is done, done, done, with people doing things to her!  They ordered her some Motrin for her pain, and I gently patted her to sleep.  I feel like a mama pit bull right now, guarding the door for fear that someone will wake my sleeping baby.  Hopefully, she will sleep most of the afternoon. 

Drew is home with the other kids today, which is a very good thing.  Megan needs a nap, Jack is tired too but won’t admit it, and Sophie is in dire need of spending time with daddy.  He and the kids will come here tonight and have dinner with Lucy and me.   I can’t wait to see them, I miss them.   All of these hospitalizations and attention focused on Lucy is taking a toll on Jack, Megan, and Sophie.  They are AWESOME  kids, but they are kids and they are reacting to all of the stress in our lives too.   Megan had a fit this morning because she did not have any clean underwear to wear.  Drew put a load of laundry into the machines so that Megan would have some clean underwear to wear soon when she carried on and said “but daddy mommy fired you from ever doing the laundry!”  He knows and I know that she was not really upset about not having clean underwear, she could care less at times if she has on clean anything, she misses mommy and wants our family to back together doing what we do “normally”.  These are the times that make “this” so “real”.

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Amber said...

Okay, this post made me cry...maybe because I am exhausted and drained, but mostly because I understand fully what your family is going through. I hope your life can return back to a normal state really soon!!

And Nathan knows fully what Lucy is dealing with...poor things. At one point, he got to where he would scream the instant anyone would come into the room because it was always for a lab draw or IV or chemstick or something painful. It sucks to see them like that.

Hugs and prayers for you all. How long is this abx run going to be? At least now you know why she has been off lately.

Anonymous said...

Thinking of you and sending prayers and hugs!! Hoping you get home soon and Miss Lucy gets well soon!
Megan, Andrew, Molly and Emma