CHD Week - Day Two - Surgery

As I told you in my previous post we found out about 3 pm on a Wednesday that Madelynn was born, 10 weeks prior, a CHD Warrior. At about 8 am the next morning, we handed Madelynn over to the surgeon and his team of miracle workers. It would be TEN hours before we would see her again.

During these ten hours she would be prepped for surgery, they would create what would become her zipper, break her breast bone, stop her heart, hook her up to the heart lung machine, remove part of her Aorta, splice her Aorta back together, close the other hole in her heart, restart her heart, wire her breast bone together and zip her back up. Piece of cake right.....

A few hours after surgery.

 

While these excruciating hours passed, I was not alone. I was surrounding by my husband (Phil), his mom, his sister, Jacquie, and my parents. We used the hours to research Madelynn's CHD on the computer. I know, I know this is not a recommended practice. However, I felt like Dorothy in the Wizard of Oz. I had just been dropped in an unfamiliar territory via a Hurricane. I needed to take this situation by the horns and get control and quickly. I felt so helpless.

The surgical team left regular messages for us they had started, they had opened her up and there were no surprises. This was a huge concern of the surgeon. They can run test over test over test but until they open the warrior up and physically see what condition the heart is truly in, everything is just a best estimate. We were warned they might have to leave her chest open in case she can't handle the shock of being repaired.

Then we received the message the repair is complete, they are closing her up and the surgeon will come and talk to us. He told us they were able to close her up and he was very pleased with both the repair of her Aorta and closing the other hole in her heart. The next 24-48 hours would be crucial.

While Madelynn was still in the Critical Care of the CVICU.

 

When Madelynn was diagnosed she had almost no blood flow to her lower half of her body. They had no idea how long her body had been that way so her body was now in shock adjusting to the proper blood flow. She remained in the critical care of the CVICU for 5 days. This area of the hospital had a nurse in her room 24/7/365. It was pretty intimidating. Madelynn had a rough 5 days, thinking she had overcome it, she was moved to a standard CVICU room (one nurse for every two patients)

While she was being moved from one room to the other she suffered a collapsed lung and paralysis in her diaphragm. There was also something else wrong and after a 48 hour culture she was diagnosed with strep-pneumonia. She was very sick, she did not want to eat and when she did she would throw it back up.

The day before her lung collapsed; she was so sick.

 

Twenty one days after being admitted to Levine Children's Hospital, Madelynn was released. She was in rough shape. She was anemic, weak, barely eating but her body was accepting the repair and corrected blood flow. Because Madelynn had been living at home for 10 weeks and had already developed a routine at home, the doctor felt she would do better in an environment she was more familiar with so we were released.

Her freedom was short lived. Because of extreme weight loss and eating issues we were back in the hospital three different times over a five week period before she finally turned a corner.

If there was anything I wanted someone to gain from Madelynn's experience it would be there is more to being a heart warrior then open heart surgery. So many of our CHD kids have eating issues, they can be smaller and/or skinner than most kids. Being in an out of the hospital takes a toll on the whole family. Trying to keep up when your school aged child is having surgery can be extremely overwhelming.

Once the crisis mode is under control, families need help finding their new normal. Sometimes families need to be reminded they are not alone. We were so lucky to find Camp LUCK (Lucky Unlimited Cardiac Kids), www.campluck.com . It is so much more than a camp. We found families like us. They spent the long nights in the hospital, they experienced the two steps forward and five steps backward and they can encourage you to never stop fighting.

Happy CHD week!!

TTFN~