Friday, October 23, 2009

An Update on my Heart

Sorry that it's been a while since I updated you on my heart. Truth is, there hasn't been much to say. I feel great, and I am as active and defiant as any (nearly) two year old. I had an MRI and a cardiac cath done way back in July and we just heard from the surgeon a few weeks ago. So, here's the plan...I'm gonna let my Mommy explain it to you. Sorry if she's a little long-winded.

Band Tightening: We were hoping we wouldn't have to do this, but E's surgeon took his test results to conference and the vote was unanimous: his heart looks good, but the left ventricle just isn't getting strong enough fast enough. Therefore, we will be heading back to Stanford for a band tightening surgery on December 10th. The purpose of the band is to make the left ventricle work harder to pump blood so that it becomes stronger. In a normal heart, the left ventricle does most of the work. In Emmett's heart, the right ventricle is pumping most of the blood. This is okay for now, but the right ventricle isn't built to withstand that kind of workload for long. Therefore, as time goes on, it could grow more weak and, eventually, fail. Therefore, the band is helping prepare Emmett for his next (and hopefully, last) surgery--the double switch.

Double Switch: This is the big daddy of surgeries. In a nutshell, the surgeons will reroute Emmett's blood flow to work like a normal heart. This is the surgery that keeps me awake at night. It is complicated, rare and risky...however, I know that God will see Emmett through it. The current plan is to perform the double switch next summer or fall, once Emmett's left ventricle is strong enough to take on the task of pumping most of his blood.

Though this is scary, we know that we are very fortunate for several reasons:
1) We found out about Emmett's condition early on. Though the diagnosis was hard to hear, there was some bit of comfort in knowing what we were dealing with from Day One.
2) We have an incredibly caring cardiologist, Dr. Younoszai, who has been with us from the beginning. He helped perform our first echocardiogram when E was still in utero. He explained everything slowly and thoroughly. Over the last 2 or so years, he has answered countless questions, drawn numerous diagrams (for me, who is apparently clueless about the human anatomy :) and given me several hugs when I couldn't hold back the tears. We thank God daily for Dr. Y.
3) We have a brilliant surgeon. We did quite a bit of research on surgeons in this area. Our cardiologist highly recommended Dr. Hanley from Lucille Packard Children's Hospital at Stanford...now we know why. He is a man of few words, much like Emmett. However, he is confident, supremely talented, and never says never. While at the hospital for E's first surgery, we met several parents who said that Dr. Hanley had given them hope when everyone else had given up. I truly believe he was put on this earth to serve children.
4) We have the most supportive family and friends...EVER. Friends and co-workers gave us gift cards to pay for our meals during E's first surgery; my best friend, Dana, sacrificed Thanksgiving with her own family to share a turkey dinner at the only restaurant open in Palo Alto on Thanksgiving night :); grandparents came to visit after the surgery to help care for Emmett; and finally, I know that all of our friends and family members are praying for Emmett...this provides the most comfort of all.
5) And most importantly, we have our faith. We know that, with God, all things are possible. We have no crystal ball, and we are trying to make the best decisions for our son with what little information we have. However, at the end of the day, Emmett is in God's hands, and only He knows the outcome of all of this. We are just enjoying each and every moment with Emmett, and I can't help but think that we have many, many, MANY more of those moments to come!

2 comments:

MommyBrain said...

Sniff. Sniff. Sniff. Okay that wasn't enough to hold back the tears. You've done such a beautiful job of explaining E's heart condition and the plan for the next year. More importantly, you expressed a strong sense of faith in what is a very tough situation. I just want my Big E to get through all of this! I just want you to know that I am here for you through all of this ... even if we can't share a holiday dinner this time.

Big hugs to your brave little lion. We love you all so much!

cookie.net said...

Emmett, Gee grandma Cookie is lost for words after reading about your little heart, but you really do have a big heart. We are leaving your operations up to the man upstairs and I know you will be okay. Everyone please say a big prayer for Emmett as he goes through this and also for his mommy and daddy. LOVE YOU WITH ALL MY HEART.