Post Surgery Day 11

12 hours can make a big difference and this morning started off with a very positive report from Ellie's nurse.  They had planned on taking out her breathing tube which would mean that we could finally hold her!  The nurse last night told us that she didn't think they would extubate her until Tuesday.  She was supposed to have a CAT scan of her chest but they have decided to hold off on that since she is doing so well with everything else.  The pic line that they put in yesterday was turned upwards but it turned overnight and made it's way into the aorta (a little too far into the heart than they wanted) so they pulled it out a bit and re-stitched it in to place.  They also stopped the lasix drip so she won't be getting lasix continuously but she still will be getting it through an IV.

I walked in to see Ellie just as they were getting started with an echo to determine how much fluid was around her heart.  After a while a cardiologist met with me and told me that the fluid looks like it has increased.  Even though she still has her chest tube in, it is not draining the excessive fluid around her heart.  The doctors consulted and decided that she would need to go to surgery and have it drained.  While she is going to be in surgery they have also decided to place the pacemaker at the same time.  Mike and I have always kind of had a feeling that she would need a pacemaker especially due to the fact that she doesn't really have an SA node.  So placing a pacemaker might give us more peace of mind when we finally get to take her home.  Today has been a good day pacing her heart - they have lowered her pacer from 115 to 80 and she has been able to keep up but she does still need intermittent help from the pacer.  Usually they wait about 2 weeks to see if a pacer is needed and we are almost to that point.  The surgery to drain the fluid around the heart needs to happen tomorrow and I don't want them to have to operate on her again.  I think this is the best decision.  She has been doing so well that I hope this surgery doesn't interrupt her recovery process too much more.  Because she is having the surgery tomorrow they have decided to keep the breathing tube in probably until Wednesday.

Ellie is still on some sedation meds but they are less.  She was awake the whole time we were there visiting with her and would have times of sadness and calmness.  The nurse last night put her baby legwarmers on and she looked so cute wearing something other than her diaper and bow.