Friday, August 30, 2013

Bodie's 4th + 5th Heart Surgeries

I don't even know where to start.... I met the Bennett Family just over a year ago through a mutual friend. The reason we were put in contact is because we all share the same common denominator: congenital heart disease.

Bodie has Hypoplastic Left Heart Syndrome. Essentially, Bodie only has half a heart. Yeah, you read that right - the kid is living thriving with half a heart. In order to help these kids thrive there is a three stage repair that has to be done - in 3 separate surgeries. Bodie already had 3 surgeries (2 were planned, the 3rd was an emergency surgery) and so at this point, at 3 and a half years old, he was ready to have his 4th and final (planned) open-heart surgery. The Fontan.

Bodie's Fontan initially was supposed to take place on July 29th. However, due to his surgeon having a medical emergency, his surgery was postponed to August 5th, and then that was moved to August 15th. His family had geared up emotionally for this surgery for months, and then suddenly they had to wait over 2 weeks for it to happen (assuming nothing else came up). That extra wait was absolutely excruciating for his family.

But August 15th finally came and Bodie's surgery happened - and the kid rocked it! However, Bodie was also supposed to have his pacemaker replaced and they weren't able to do it due to some complications - so Bodie had to have his chest opened just a few days later to have his pacemaker inserted again. Though the pacemaker replacement isn't as big a deal as the open-heart surgery, it was still tough to have to look forward to what would be Bodie's 5th heart surgery instead of focusing on recovery and going home. But, being the rock star he is, Bodie did fantastic during his pacemaker replacement and he went home just 4 days later - just EIGHT days since his open-heart surgery! For real! So Bodie went home on August 23rd, and he's still home now and doing absolutely fantastic :-)

It just blows me away to think that Bodie went through 2 heart surgeries just 4 days apart, and he still went home 8 days later and he's doing so excellent. And that he's so happy and active at home. The kid is incredible. And don't even get me started with his parents. WOW.

His incredible mom, Amy, was with him constantly. She never left his side. Never. She was there day and night. Making sure that his meds were given on time, making sure his oxygen levels were great, that his pain was under control, that he got up and moving, that the fluid was coming off properly, that Bodie ate. You name it, Amy did it. I know that's in the "mother's handbook" but Amy is incredible. She was on top of things 24/7 AND she still updated their blog at least once a day to keep us all in the loop. WOW. She was the greatest advocate for Bodie - she made sure things got done when they needed to be done. I'm 100% that the reason why Bodie got out of there was soon as he did was because Amy was so on top of things, making sure everything ran smoothly and her kid was taken care of properly.

His amazing dad, Dusk, was just the fun Bodie needed. Dusk went between the hospital and their home to take care of Bodie's older sister everyday - and the guy just had a hip replacement and his other hip is still bad. Dusk was go-go-go, making sure both of his kids and his wife were taken care of. Amy wrote on her blog: "Thank God Dusk is so great at working to entertain the kids. I have to give a huge shout out to Dusk... I swear, he would stand on his head for hours, folded into a pretzel, with the iPad angled at just the right angle if it was what Bodie needed to take his mind off everything and be entertained. I just don't have the patience. At one point today, Dusk was standing there, opening and closing 3 different singing cards at once over and over again, just trying to get Bodie to crack a smile. I am so grateful he and I are in this together!" Now that is teamwork! Several times while I was there visiting, Bodie would cry in pain and Dusk would just cuddle his little boy and say "I'm so sorry you have to go through this, my heart breaks for yours." His love for Bodie just shone through, and Dusk was just what Bodie needed through those incredibly hard times.

And lastly, Bodie's big sister is such an amazing little girl. She visited her brother several times and got him smiling and feeling so much better. As Amy said - Sierra was just the medicine Bodie needed. And while Sierra was home with her grandparents she was SO brave. She's not your ordinary 6 year-old. Sierra is an unspoken hero in this journey.

Amy, Dusk, Sierra and Bodie - thank you so much for allowing me to document this journey. It was an honor. It has been a while since I had been so inspired while editing a session. Thank you for allowing me to be there and be so inspired. I know this post doesn't do this journey justice, but it was an honor to document this small part of it. I love you Bennett's. Thank you for being so transparent during this journey and inspiring so many of us. - Hugs, Brenda

Thursday, August 15th - Fontan Surgery (4th open-heart surgery)
Bodie waiting to go into surgery. Obviously he was SO stressed about it :-)

I  know the following images to look at, but this was Bodie immediately post-surgery. He was still intubated and full of lines and tubes... Again, I know this is hard to look at, but this is the reality of Bodie's journey...

Saturday, August 17th
Bodie was finally starting to feel a little better, sitting up and playing a little :-)

Monday, August 19th - Pacemaker Replacement Surgery (5th open-chest surgery)
Thankfully Bodie was able to be extubated in the OR and he was resting rather well post-surgery.

Of course, as soon as he woke up he wanted water so a water sponge would have to do.

Such is a hospital child's room with congenital heart disease. Hospital equipment and toys. This is the life of a child with half a heart.

While Bodie was hospitalized big sister Sierra got her first pair of glasses, and so they were FaceTiming with her and seeing her glasses for the first time. It stinks that they couldn't be together for this moment, but they were still together during it :-)

For the first time in his entire life, Bodie has pink feet!

A little peek at Bodie's new pacemaker incision on his tummy....

Amy said this should be on an Apple ad - could not agree more! :-) So thankful for technology that makes these extended hospital stays just a little bit "easier".


Thursday, August 22nd
I couldn't believe my eyes when I went to visit Bodie just 3 days after his pacemaker replacement surgery - he was dressed and in the playroom, walking around and playing like nothing had happened! This kid is AMAZING!!

SUPERMAN. Bodie is the stuff real super heroes are made of.

Prayers are still appreciated for Bodie as he continues to heal from this surgery. This journey is far from over, but prayers go a long way.