Sorry for the delayed update - Blogger wasn't keen on me logging in last night - I tried several times and I couldn't create a post.  Lots has happened since then.

The medication they started Finley on yesterday is called Propanolol.  Its a beta blocker intended to lower the pressure around her pulmonary valve.  Its not typically used post repair - they do however use it frequently in un-repaired kids who have pulmonary stenosis and it works quite well.  They weren't sure if it'd work for Finley - but so far it has!  In the ER on Sunday the pressure gradient around her heart was 90% - which is pretty much the "alarming" level (the doctors called it something else - equally as scary : o ).  After three doses, her pressure was down to 50% - which is "moderate" (normal is 10-20%).  The doctors ultimately hope that she can remain on this medication and it will continue to work for her for several months which will allow her to grow, and it will allow her heart to grow and hopefully negate the need for another surgery.  At the very least, the purpose is to carry her forward at least several weeks so she can at least heal from the last surgery.  Admittedly, its tough to be optimistic on this.  Finley always seems to choose the road less traveled.  The other thing that quite frankly sucks the most is that this is happening at all.  Imagine gearing up for something for 9 months.  The biggest, most stressful moment of your life - a life changing event that you wanted more than anything in the world to go right.  A day that you feared the most but could not wait to come for when it was past, it would be the first day of the rest of your child's life.  And then it goes wrong.  An essentially, we might be back to square one.  This wasn't supposed to happen.  We had always just assumed that Finley would have her repair surgery and that would be it.  Huge hurdle cleared.  Behind us.  It sucks.  And as much as I try to always be positive, its been hard this week.

So, the good news about the heart medication working came with some bad too (seems to always happen that way).  In an effort to find out what was causing Finley's vomiting and diarrhea that had been going on since Sunday (which I think was attributed to her antibiotic) they took a stool sample that ended up testing positive for C. difficile.  Its basically a nasty stomach bug that tends to occur in people who have been in the hospital and who have been on antibiotics (check and check).  The trouble is, in children under 1, the test gets a lot of false positives because c.difficile bacteria are normally occurring in a lot of babies.  In order to be safe, they stopped Finley's feeds for a while last night in to today, did another abdominal xray (which came back normal) and they just monitored her for a while to see if she continued to have diarrhea.  She actually had a great day today and for the first time since Saturday, didn't have an incredibly fussy period that preceded a big poop and then some vomit.  But, I also had them stop the offending antibiotic today and they discontinued another medication - I still think that was the culprit.  In any event, what all of this simply means is that they are going to start her on yet another antibiotic to treat the
the c. difficile.  And this, as you can imagine, is the least of our worries, but yet another annoying thing that Finley has to endure.

I did have one small victory at the hospital today and that was that I successfully negotiated the cancellation of a CT scan that they wanted to do on Finley.  This would have entailed going under anesthesia again and being intubated (not to mention the exposure to radiation)- which would have meant recovery in the PICU and potential re-irritation of her airway - the one thing that ISN'T a concern right at this moment.  I was adamant about the fact that I really didn't want Finley to have to go through this as it not only meant potentially complicating things further, but it undoubtedly meant a longer hospital stay - and at this point - I can't get her through that door quick enough. And thus the good news came that her cardiologist agreed to let it pass for this admission and so Finley will get a little break.

I have to admit, when I got to the hospital this morning, I wasn't in the greatest of spirits.  I was tired and to be honest felt a little defeated.  And then I walked in to room 523 - and there was my little girl - a smile wide across her face - kicking her feet in unison - and clapping her hands.  Suddenly, everything seemed alright.