Better?

The last two days have been a roller coaster. 

Abby slept some Tuesday night--not great--but sleep.  She woke up Wednesday with the same tightness and fussiness she'd been having.  I was really concerned about her Baclofen pump because I haven't seen her muscles so tight since the pump was put in. 

I made a series of phone calls trying to figure out what to do.  I was on the phone for more than an hour trying to find someone to evaluate the pump.  The Dr. who does the pump said that what we were seeing could be Baclofen withdrawal.  Suddenly stopping the medicine can be life threatening, so they called the neurosurgeon.  We got a call back a few minutes later telling us to come right in a be prepared to go to surgery. 

That was a panic moment.  About 15 minutes later as I was about to walk out the door, they called back and got more details of what was going on.  They decided the Ortho Dr. who does Baclofen should evaluate her first.  We ended up at her regular pediatricians office, who ordered all of the x-rays we needed.  We went for those and then went home for the night. 

We saw the ortho. today.  She didn't see any obvious kinks in the tubing, but she said it is very flexible and can be compressed.  I think Abby has gotten very thin, and her bony little hip might be pressing on the line when she's in bed.  That is entirely possible, so we are going to try to establish a pattern to see where the problem might be.  They removed all the medicine from the pump and put new in, just to be sure the medicine itself is good.  Then she gave her a bolus of Baclofen in case there was a little blockage in the tubing itself, the pressure of the quick medicine might be able to clear it.  We also increased her overall dose. 

I am hoping this helps her.  She really doesn't need a big surgery.  She's very thin, and those stiff muscles are burning calories she can not afford to lose. 

So far she is looser and seems more comfortable.  This has been a crazy-stressful week!  It's 8:30pm and the twins are fed and snuggled up in bed.  Hannah and Sarah are chillin' out, and as we all know, THAT is a huge blessing!  I have tons to do around here, but I'm going to relax and enjoy a few quiet minutes :)

I'm cautiously optimistic that Abby is either going to feel better with what we already did or we will be able to figure out where the tube could be compressing. 

Oh--and good news!  Her hips looked GREAT!