• PINK and lovin’ it!

    Date: 2013.11.26 | Category: Benjamin | Tags:

    We woke up bright and early to be at the hospital at 7 a.m. for surgery.  Ben wore his Superman shoes, cape, t-shirt, coat, and hat that big sister, Cassie, had knit him.  He ran to the door and said “Let’s go fly in the airplane mommy!”  I was prepared for a fight but he didn’t get upset.  We talked about trust and faith.  We talked about what it would mean for him to feel better.  I asked him if He trusted God’s plan for him and he said, “Yes! Ok, let’s go mommy!”  We headed off to the hospital where he was pretty happy right up until they asked him to take off his cape.


    You can’t ask SuperBenBen to take off his cape.  They quickly gave him a nice dose of versed and Ben was soon happy again.  A drug that removes the memory of going off to surgery without your parents and puts a smile on his face, is okay by me.


    We had updates throughout the day that things were progressing as planned.  At around 2:30 Dr. Del Nido came out and told us the good news.  Ben had tolerated it fairly well.   The were able to switch the great arteries instead of doing the Senning procedure (atrial switch), they took care of his PDA, did the pulmonary artery banding, and left his VSD alone for fear that he would go into heart failure if they fixed it.   He had a fair amount of bleeding but we were expecting that with his platelets being in the low 20’s.

    Many people have asked why we went to Boston.  It has been a very hard decision.  Most children with Ben’s defect that are born in the US get fixed at 7 days of age.  There aren’t a lot of 5 year olds with uncorrected TGA out there.  We chose to go to a place with the highest volume of kids that are older getting repaired.  There are quite a few good hospitals with a high volume of heart surgeries across the US.  With Ben’s repair, it came down to CHOP (Children’s Hospital of Philadelphia) and Boston.   Dr. DelNido did the best job of answering our questions and Dr. Marx was very kind towards our family and our situation.  So off to Boston we went.

    This afternoon we are praising a God that would give Benjamin a hope and a future.  We are thankful for every day we have had with this little guy.  He truly is the sweetest soul.  ‘Who knows what the future will hold for our little guy but we have now given him the best possible hope for a longer life.

    He will be sedated for at least 48 hours and then they will start waking him up and see what happens.

    In just a little bit, I will post a picture on this post of his pink fingers.  His oxygen saturations were 100% for a while.  I’m still waiting to be let into the PICU, but as soon as I see those fingers I will be doing a happy dance and I will share that joy and the picture with you.


    Thanks again for all the encouragement and prayers!   We are truly blessed to have so many prayer warriors on our side.