Tuesday, July 1, 2008

Tiny hole, big decision

Today I am going to write about a different kind of adventure. It is what is on my mind and I simply can not come up with the momentum to write about anything else so here it goes.

My son, Ben, was diagnosed with a PDA when he was 2 months old. We went in for a normal checkup with his pediatrician and when she was listening to his heart she suddenly got very quiet. It was taking much longer than when she gave Mari the once over. Finally she told us she heard a very pronounced murmur and wanted us to go to the pediatric cardiologist that day. To say we were terrified would be the understatement of the century. The cardiologist fit us in that afternoon. We waited in fear through the echocardiogram to hear the results. It was a moderate PDA. OKay, well what is a PDA? When children are in the womb the two major blood pathways (aorta and pulmonary artery) are connected with a blood vessel, the ductus arteriosis. When children are born this pathway closes because they can now breath on their own. At least that is what's supposed to happen. Ben's did not close. Having it open is dangerous because it puts strain on the heart and lungs and has a larger chance of developing an infection. We were told Ben's needed to be surgically closed. Common procedure is to wait until they are about a year old so they can grow and handle the surgery better. Luckily Ben qualified for a catheter procedure which involved going up his femoral artery and closing the hole with a tiny coil. This absolutely incredible advance in medicine meant Ben would avoid open heart surgery. We went home that day in a daze but relieved that it wasn't something worse.

Months passed by. We went in for checkups and things stayed as they were. The hole didn't get bigger (warranting open heart surgery) or smaller (many times it will close on its own in the first months of life) so we kept on the path we had been on.

Ben grew and though he wasn't advancing on schedule (another long story for another time. Recently Ben was diagnosed with Sensory and Motor Integration Disorder and we are still iffy about Cerebral Palsy. Can we say therapy 3 times a week!) he was thriving and happy and his heart didn't seem to be affecting him too much. He did wear out easier than his sister but it wasn't horrible. Finally his first birthday came and the surgery date was set. October 1st, 2007. It went smoothly. They inserted the coil (I have a duplicate of the actual coil that I keep in my purse) and though there was still a small shunt (or hole) it almost always closes on its own.

After the surgery we had to keep Ben still for a few hours. Have you ever tried to keep a one year old still? Holy cow! We spent hours throwing a ball over his head as it was the only thing that kept his attention and kept him still. We did wagon rides around the PICU and tried our best to entertain. I spent the night at his side in the PICU and got about 2 hours of sleep between the nurses coming in and Ben needing me. Fortunately that morning we got to come home and Ben was back to normal in no time.

After the surgery we immediately noticed a surge in energy. He still wasn't as frisky as his sister but she is pretty frisky in general. He started having great strides with his therapy and things were on the uphill swing. We went in for a cardiology checkup and the dr said he still had the shunt. He decided to wait a few months and see if it closes on its own since that is what almost always happens. Okay, no problem. We went home and continued on with life.

Now by now you have probably noticed I keep using the term "almost always" more than once. Well I have good reason. Yesterday was Ben's cardiology appointment. They listened and heard no murmur. Great. Then we went into the echocardiogram room and got the news. The hole was still there. What now? The doctor explained that he had no clue. He had never had this happen before. It was extremely rare. He said there have maybe been 5 cases ever. Ever! He does have a good plan though. He is going to consult with all his colleagues and put Ben up on the cardiology boards and find out what they did in those few cases. And then we will develop a plan. Do we go through another surgery or just leave it alone? The doctor said for me to call in a month after he has time to do the research. So now we wait again. Sometimes life can be one big waiting game.

The good news- it could be worse. There are so many people out there dealing with such bigger things. Children with cancer or incurable diseases. Children with life threatening heart ailments. Parents who have had to deal with the loss of a child. Those are big problems. I try to remind myself of this when I get down in the dumps about our luck. Sure, our luck isn't the best with these things but it isn't the worst either. I get to sit on the couch and type this and listen to my daughter giggling hysterically at her Daddy tickling her while my little boy sleeps soundly in his crib. Even though it can be pretty hard at times, overall life is pretty good.


Terri said...

Shar, I will be thinking about little Ben and praying that his Dr can come up with something that can fix his little heart! Hang in there. Don't feel guilty for being sad. He is YOUR little boy and this is what YOU have to deal with right now. No one will fault you for that! Hugs!!

Christy said...

Shar, simply beautiful! Love the blog, love the pics you posted, and it is so well written! I'm sorry about Ben's ductus not closing like it should! I hope it miraculously closes on its own!

The Corradetti Clan said...

Shar, I will keep your handsome little boys in our prayers. The pictures of him are awesome. Dont be yourself up. You are a stong woman with a great attitude. I would be losing it.

L I S A said...

What a beautiful post about Ben. I love seeing the chronological pics. I have every faith Ben will be fine, afterall he's a member of the odds-defying *****s! [insert family name]

Jessica Kate said...

I loved the trip down memory lane with my future son in law. He's such a honey! And a fighter. He'll win this one too.
Kisses from auntie Jk

Sheri said...

You have such a gorgeous son. He has the most beautiful eyes. He has made it this far and has done so well, that he will continue on. Have faith.

The Romero-Schroeder said...

You are such a strong woman, i´m so happy to be your friend, and so proud to have some one like you in my life.