Thursday, June 20, 2013

Living Life on the Edge of the Cliff - Super Joe's Next Surgery

Last night I had the pleasure of hearing a wonderful tribute by a friend of mine about a friend of ours who had passed away. The speaker is a Stage 3 breast cancer survivor and our friend who passed away had a degenerative muscle disease. The speaker talked to the audience about living life right out there on the edge of the cliff. Living life so fully and with such appreciation because life has put you out there on the edge and you can choose to appreciate every single second and leave nothing left behind or you can cling to that cliff and concentrate on all you might lose if you end up going over the edge.

Our family felt like it was pushed out to that ledge when we learned about Joey's diagnosis while I was pregnant with him. We felt like the air had been sucked out of our lives. We felt like life as we knew it was over. And to be honest, life as we knew was over. Thank, God.

Life as I knew it before was great. Life before was lovely. We had Tommy, who was, knock on wood, pretty healthy. We had our little family. Our routines. Our little life. Life was good.

The experience of being pregnant with Joey and having Joey is what pushed our lives to living on the edge of that cliff. His very existence was like a focus lens on a camera. Suddenly the world became sharper and clearer. Suddenly it was easy to see what was worth wasting time and energy on and what wasn't. 

Life on this edge is incredible. Having Joey as a son has helped me to try and be a better parent, a better wife and a better person. Mind you-- there is plenty of room for improvement and this is an ongoing effort at being "better"-- but it is an effort that evolved from being Joey's mom. Having Joey has helped me to slow down the urgency with which I used to rush through life. Having Joey has helped me to appreciate the little things as well as the big things.

A couple of weeks ago my parents kindly treated our family to an entire week at the beach. Joey had been in the hospital with pneumonia a few weeks before the trip and then the night before the trip he was sick again, but this time with Croup and an upper respiratory infection. We were determined that sickness was not going to keep Joey or any of us from a week away from it all and we took him in to see the doctor on our way as we headed down South on 77. With a handful of prescriptions we took off.

Super Joe was sick the entire week and, yet, by the time we were packing the car back up for the long drive home I turned and looked at my husband and said, "This was the best week of my life." 

And it was. It was incredible. We played. We slept. We swam. We grilled out. We were lazy. We didn't go to a single appointment. We didn't visit a single doctor. We didn't fill out a single form. We didn't spend a spare second on the phone with the insurance company. We didn't return calls. We didn't check email. We lived life right on the edge of that cliff and enjoyed every single second with complete abandon.

Friday is Joey's eye surgery that was supposed to take place a month ago, but got put on hold when he had pneumonia. We met with his doctor on Monday and we have our surgical plan for Friday. His doctor is moving to Dubai and Friday is his last day of surgery in the States for a couple of years.

He told us that his entire practice is pretty much wrapped up and in a good place except for Joey and he wants to make sure Joey is in a good place before he leaves. We appreciate this.

This time around I am having Tom go back to the operating room and put the gas mask on Joey. It's one of the worst parts of these surgeries. They want the parent to go back and put the sleepy gas mask on the child so your child is comfortable. I hope it has made Joey comfortable because walking back to that cold OR and trying to hold your child down while he squirms under the pressure of your hand holding a gas mask to his face is a bit much to handle for a third time.

Originally, Tommy wanted to go to his brother's surgery and we entertained the idea, but it would just be too hard on all of us. We usually have to be there by 6am and Joey isn't allowed to eat or drink, so we try not to do that in front of him. Then there is the time between when he is out of surgery, but hasn't woken up. Let's just say he doesn't exactly get up on the right side of the hospital bed. He wakes up angry. Really angry. Pissed, in fact. Pissed that he hasn't eaten, pissed his eyes hurt, pissed his throat hurts from being intubated.  We decided we could have Tommy come another time when everyone involved is older and more able to deal with the drama. 

The surgeon's plan is that after Joey is under general anesthesia, the surgeon is going to test Joey's right eye for Brown syndrome. If he does have Brown syndrome (a tightening of a tendon that does not allow the eye to fully move), then the surgeon will pull back the tight tendon and implant a small silicone "spacer" and then he will pull the tendon back down.

If this is what happens it will be a little more involved than his other eye surgeries and the risks are greater for infection or extrusion (in which the implant pops out). My concern is if this will make Joey uncomfortable and what can we do to make him feel better.

If it is not Brown syndrome, then the surgeon is going to go into Joey's left eye and try to tighten up his wispy and loose muscle. 

So, to sum it up-- Joey will either have surgery on his tendon in his right eye or on his muscle(s) in the left eye.

As our surgeon told us, Joey is not "vanilla." Which I think is awesome. Oh, hell no, he is not vanilla. He is Rocky Road and he is also living life on the edge of the cliff and loving it. 

What in your life has pushed you to live life on the edge of the cliff? Has it made you a better person? 

Have a great week and if you think of it-- please send a prayer or two to Super Joe that he the surgery and recovery are not painful.

Happy Thursday!

Wednesday, June 12, 2013

Stand Up For Downs Contest WINNER!!!

The stories of everyone's families and connections to Down syndrome were so awesome that we ended up picking the winner the good old fashion way-- we wrote down all the names, put them in a hat and drew a winner!!!

In the meantime-- there is still time to purchase tickets to the 7:30 pm show at The Tangier!!!

Here are the important details:
7:30 PM

Featuring Headliner- Gary Gulman (see a sample here)and Featuring Mike Polk, Jr. (see a sample here), Josh Womack and Rob Snow

Tickets are $30-$50 (to learn how to win a pair of $50 VIP tickets-keep reading!)

All proceeds go to Stand Up For Downs

To find out more about the incredible money we have raised so far and where it is going, visit my blog post here. 

Back to the important part-- our contest winner to 2 VIP tickets valued at $50 each is.... drumroll..........


Chrissy, I will send you an email about your tickets and how we can get them to you.  

To everyone who entered-- thank you and to everyone who is coming-- thank you!!! This is going to be a super, super fun night out.

We hope to see you there!!!

In the meantime, we are working on getting Joey signed up for therapeutic horseback riding!!!! He can start when he turns 3 in August. We met an awesome family in the DS Club on vacation and the mom, Meg, told me that her son started walking soon after he started riding therapy. We are so excited for Joey to try this option out.  Has anyone else done this?  

Happy Wednesday!

Friday, June 7, 2013

Happy 2nd Heart Day, Super Joe!

Last year I had the idea to celebrate Joey's Heart Day-- the yearly anniversary of his open heart surgery. We don't do anything major, but we get a cake and we thank God for watching over Joey for helping him repair part of his heart. It's just a little moment we take to celebrate how far Joey has come along in his journey

2012 Heart Day

Joey has been a fighter since before he was born. Overcoming a septated cystic hygroma around his brain, fetal hydrops (excessive fluid built up all around his body), fetal ascites (fluid built up around his abdomen late in the pregnancy) and congenital heart defects were the first battles our Super Joe faced before he was even born.

Our doctor decided he needed to be delivered 3 weeks early due to all of the fluid build up. It was an incredible day-- August 27, 2010.

He was born with extremely high bilirubin levels and spent his first 8 days of life under the bilirubin lights.

He was never able to breastfeed, but after a few weeks we finally figured out the way to help him drink thickened breast milk through tiny little bottles that I pumped for six months.

People have asked us why we took Joey to Michigan for his surgery. For us it was simple. We looked at the top five pediatric heart surgery programs in the country. Then, because Joey was not allowed to fly, we narrowed it down to those in the top five that we could drive to. That is how we arrived at The University of Michigan. From there, we researched and learned that Dr. Bove was the surgeon we wanted for Joey. 

Joey's original congenital heart defects were a PDA (that closed on its own), a large ASD in the middle of his heart and a leaky mitral valve. The surgery in Michigan repaired his ASD and attempted to repair his mitral valve, but it was too small at the time, so they were only able to put one stitch into it.

Since his surgery we follow up with our local cardiologist who has been Joey's doctor since he was in utero. Dr. Khan is an awesome, awesome cardiologist. During our latest follow up and echocardiogram we found out that Joey's PDA has re-opened. It is currently a very small hole, but it, along with his leaky mitral valve are still closely followed and at some point will likely need surgery again.

Two years ago tonight we tried to get to sleep in the Med Inn at the University of Michigan C.S. Mott's Children's Hospital. For nine days we stayed inside the hospital and never left. The day before Joey's open heart surgery we spent almost 7 hours in pre-op appointments and twice his surgery was almost called off due to his white blood count levels and his thyroid levels. Late the night before we got the call that the surgery would still go on. 

This picture still cracks me up!

One of the hardest parts of going away for Joey's surgery was leaving his little brother, Tommy behind at home.  At the time Tommy was 2 1/2 and we had never spent this much time away from him. To help, we got him a bear that has a "repaired" heart to try to help explain what we were doing with Joey. We sent him a "mended heart bear".

Mended Heart Bear

After turning Joey over to anesthesia we headed up to the family waiting area and waited and waited and waited for what seemed like forever. When we finally got the page that he was out of surgery we were both excited and scared.  What would he be like? What would he look like? 

Here is what it was like:

Bloated. On what seemed like a million machines. In a medically induced coma. This was what post-surgery looked like for about 36 hours and then slowly but surely we were able to hold him again and every day another piece of machinery and tubing was slowly taken away until he started to look like our Joey.

And finally, he found his sweet smile...

It's hard to believe this was our little man two years ago. We are so grateful to get this chance to look at where he was and how far he has come and to celebrate his beautiful little life.

2013 Heart Day Cake with two sets of stitches for his two repairs.

Joey's life has given our lives a reason to celebrate every single day. We celebrate the major milestones like his heart day as well as the minor ones such as him starting to say "hi", "Hersh", "Jo Jo", "please" and "bye". We celebrate his "new" braces which are really his old braces that have been shortened and are working much better. In the past two months I have received texts from four different people who have all had dreams that Joey had started walking. That will soon be our next celebration-- there is no doubt!

Thank you for celebrating his story and his life with us and we hope you have a very happy heart day as well!!!

Dottie and Super Joe