Saturday, April 23, 2011


Just a quick note to share that Madison is inpatient right now getting IV antibiotics and fluids to try to stabilize her so we can make our planned trek to Houston this Sunday.

After more than a week of throwing everything we could think of at a nasty g-tube site infection to no avail, and watching her autonomic issues go haywire while her body tries to deal with the infection, we finally gave in and were direct admitted this afternoon.  We should have the g-tube site culture results by tomorrow morning and will know better then which antibiotic is most likely going to work, and are hoping the IV fluids will do their magic and get her autonomic stuff back in check (as much as they ever are).  The “plan” is to try and discharge tomorrow afternoon, with Madison hopefully more stable, so we can then hit the road Sunday midday for Houston for a week full of appointments.  NOT the ideal way to be doing this, but the best we can do right now.  Of course, plans change, and we will have faith that whatever is supposed to happen, will.

It’s been a complicated, frustrating, difficult week with more than a few screw ups, but tonight I am deeply grateful for:
An amazing pediatrician
Some lessons learned
Our favorite phlebotomist who helped rescue us yesterday (even if it was just giving me the courage to stand up for what we know about getting blood from Madison)
The ICU nurse who came to the regular floor just for her, and was able to get Madison’s IV placed today with few options to work with
The beautiful, incredibly comfortable hospital we are visiting this time (first time inpatient at Children’s Legacy, and WOW)
My hubby who is relieving me for the night so I can keep working on getting ready for Houston
And the thoughts and prayers of our family and friends!!

Love & Hugs


  1. Agh!! I'm so sorry. I hope the antibiotics do the trick.


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