Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon


The way is not in the sky. The way is in the heart.

-Buddha



Wednesday, November 16, 2011

Welcome to CCU..may I show you to your suite....





We were walked over to the CCU from the CICU on Sunday afternoon.  It is such a great feeling to have your little parade across the bridge to "the other side".  There are 3 different CCU rooms.  There are small private rooms that share a bathroom with the room next to them, there are double room which hold two patients and those patients share a bathroom and there are big private rooms that are on the ICU side that share a bathroom. If the room next to you is empty or has a baby, the parents can use the bathroom.  If they have a child or teenager (and at times even adult cardiac patients are at the hospital) then parents have to use the public bathrooms on the floor. When X went to CCU after his Norwood we were in a small private room.  When he was admitted in August he was in one of the large private rooms.  We lucked out again.  There is one double room that for some reason they can not fit two beds in.  Which means you get a double room to yourself.  Somehow, we got that room.  SO on one side was Xavier's crib and a couch for me to sleep on and on the other side was two chairs, and a couch for Nate.  He even set up shop and worked.  We even both got to stay, which never happens.  We had our own bathroom and shower.  We had a view of the atrium, which is home to the Ryan Seacrest Foundation Radio Station.  While we were there, Plain White T's and Gym Class Hero's were the guests.  
Our biggest issue in the CCU was Xavier's O2 stats and his feedings.  He passed his swallow study with flying colors.  It was time to start going down on the thickener.  It was hard for him.  He was use to that thick formula.  We are still working on being completely without the thickener, but he is getting there.  
For a while, I was sure we were going home with the oxygen.  They would ween him off and then his stats would drop, then they would put him on again..and back and forth.  It just took a little time for his heart to adjust.  Everyone kept telling me to just give it time. You expect things to be better right away post Glen.  It is sometimes easy to forget that my little man just had his SECOND open heart surgery and he was only 4 months old.  I had to keep reminding that cynical voice that I carry around with me to be patient.  It took some time but he finally got off the oxygen....and we have been in the 90's every since!!
You meet a ton of doctors and nurses when your at CHOP.  Some have become like family to us.  Hadly and Lori (two amazing nurses), Dr. Wernovsky, Dr. Gaynor, Dr. Roxanne, Dr. Goldberg, Andrea (the awesome echo tech) Alyson and Meredith (fantastic NP's) and some you see once and never see them again.  Since you must be pretty fantastic to be at CHOP I have learned to judge them on one very simple thing...how long it takes them to comment on how cute Xavier is.  Funny..they have all passed my test!




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