Tuesday, April 30, 2013

Some More Irritating Developments

Yesterday was the polar opposite of the day before it.

Everything started out well.  She woke up in a decent mood, went to the bathroom, passed more gas, and began to walk.  We played in the art room with paint and a very cool dollhouse.  She didn't put out any more liquid from her NG tube, so it was eventually taken out.  She was put on a modest clear diet (water, juice, jello, popsicles) and she was even happy and energetic enough during the day to dance around her room batting balloons.

Then, we noticed her central line was leaking.  Of all the freak things to happen, this one is completely strange (although when you're talking about a kid who has a defect affecting every 1 in 10,000, strange becomes normal).  So, after two different surgeries to put in the central line to begin with (one of which prompting the surgeon to say he's only experienced having to put in the line again every two years or so...again...of course it would happen to Karsie), it's still not working.

So at this point, Karsie has been sustaining herself on the clear diet she was put on and taking oral medication.  The good news is that she's doing an "okay" job of it.  (Okay means she is not drinking enough to be well hydrated...just hydrated...which hopefully is good enough until she can gain more strength by eating).  The bad news is, we're kind of at the mercy of our surgeon.  Due to some horrible communication yesterday, we're not exactly sure what he wants to do or what he even knows about since he wasn't at the hospital.  We hope he will let Karsie try to sustain herself and take out the line (as it's useless anyway) in the process.  Then, it's up to her.  However, we don't know what he's going to say.  We just don't want her to go through another trip to the OR.

Ugh.

2 comments:

  1. God be with the three of you!

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  2. Prayers are answered!

    ReplyDelete