The roller coaster

Sydney still to seems be so pale.  I just don't understand this loss of color in her face.  She came home this way, but I really expected it to be better by now.  I guess, I really expected things would be easier or better--at this point.  In the last week, I have called the ped's office, had Sydney weighed, spoke with Syd's cardio Dr (Dr Falterman) on the phone, called the on-call cardio doc at 1am, seen Dr F (echo, ekg), watched Syd's sats and fluid out put, and even had to call the weekend on call cardio doc.  I swear, I am not crazy!!!!  I am normally very level headed.  I just did not think her appearance and sats would be worse?!  Apparently, this all seems to be par for the course....I guess?  Dr F feels her sats should be higher, but this will get better when her volume gets better (b/c she was so dried out).  But, the hospital wanted her sats to be 85% or higher, most of the time. Her sats were close, but defiantly varied---lowering during exercise and deep sleep). I was told by Dr A (another doc in our cardio practice) her sats would be the same, if not lower, when she came home.  The other time I have called the office, I have been told the same thing.  I guess I am scared.... and a little confused.  I have been told different things at different times.  It is hard not to freak out when I don't know when I should freak out----so the result is---I am freaked out most the time. Sydney sats were all over the place this weekend, so I have been keeping an eye on them.  The doc's office has given me a range that they would like to see Sydney in.  Should, Sydney fall out of that range for a period of time, I have been instructed to call them.

Tomorrow, I will take Sydney into the ped office.  They will do a full work up on her --- including blood work.  I hope that her numbers are good. This information will be sent to the cardio office for review, and  I will try to update you all tomorrow.

Yesterday, it was helpful to talk to other heart moms.  It does seem to take several months for our childrens little bodies to get used to their new anatomy.   It does seem to be normal for the sats to be lower at first.  It is also normal to feel--like I feel.  Thanks Karen!  After the first surgery...you just prayed to see your child make it to the 2nd surgery. It was hard.  BUT, after the Glenn (2nd surgery),  there was such an improvement.  It was not an easy recovery, we dealt with a lot of fussiness, junctional rhythm, and fluid retention....but she looked much better.  This time we have some of the same issue, but added ones.

I know we will make it though this, but I feel like we are on one heck of a roller coaster ride.

Christy