Not really an update

  I have no idea how we did it for three months.  We have been back at the hospital for four days and we are itching to get Lucy back home.  Over the course of four days we have had a lot of nurses in to visit Lucy.  So many of them could not wait to cuddle with her.  What a blessing to have such an amazing group of nurses that can be with Lucy when we are not able.  Everyone keeps saying how big and different she looks.  This is great to hear because leaving the hospital back in May we were told that Norwood patients have a hard time gaining weight.

Last day in the PSHU - 5/7/14

 First day back to the PSHU 6/27/14

  The weekend was pretty uneventful.  Just monitoring her stats and resting.  Monday morning she had a bit of a fussy episode and they put her on clonidine.  This is just to keep her relaxed while she waited for her heart cath.  Tuesday they took her for the heart cath around 11 o'clock.  The procedure took a little longer than normal because they were trying to place the catheter in her groin.  Unfortunately she didn't have a good vessel and they ended up going through her neck.  After they were done, Dr. Javois came out to talk to us.  What they are looking at is narrowing or blockages in blood vessels, measuring pressure and oxygen levels and pumping function.  There was a little narrowing in her aorta and the shunt, her pressures were a little high and the pumping function or squeeze of the heart (the reason Lucy was admitted) was mildly decreased.  He said the pumping function looked better than what they had seen on the echo.  It is possible that the Milrinone has helped with that.  The narrowing and pressures were not too concerning.  They were also able to extubate before she went back up to the PSHU.  Dr. Van Burgen stopped by after we were back in the room to give us his thoughts and answer any questions.  He talked about her pressure being slightly elevated but it didn't really give us an explanation about the decreasing function.  Many kids get sent home on Digoxin after the Norwood, which helps the squeezing function.  This medicine also lowers heart rate, and since Lucy's was low they did not send her home on it.  We asked about the next surgery being scheduled and Dr. Vanburgen felt that it would not fix this issue and would prefer to wait.  They would like to continue to monitor her for a couple of days and will discuss her case tonight during Cath Conference.  We will hopefully have more answers by Thursday and will pass along the news.

Lucy thinks this stay in the hospital is much too long!

We ask specifically for prayers about Lucy's heart function.  We have read that the heart can continue to decline through this process and could eventually lead to the need for a heart transplant.  We are hoping that this journey does not lead us to path.