Sunday, May 5 2013

It has been a little more than three years since I last posted an update in Erin's blog.  This blog was started originally for the purpose of keeping family and friends up to date on Erin's condition when she was in the NICU at birth due to her heart defect and other medical issues.  In the NICU, cell phones are prohibited, but even if they weren't it would have taken all day just to call the number of people who wanted updates.  Thus the blog was born.  The more I wrote in it, I realized that it had another purpose selfishly for me.  It was cathartic to put down in words what we were feeling and dealing with.  I also realized that it would be an incredibly important journal for Erin should she ever want to look into this part of her life, and understand how far she has come.

While I have received friendly prodding over the past three years to update the blog, I haven't really had a desire to do so, and frankly hoped that I was forever done with it.  I just wanted Erin to be a normal, healthy little girl.  A girl who formerly had a heart issue and now was over it.  A girl who's parents didn't look at her every time she runs out of breath and wonder if this is the beginning of a serious incident.  Unfortunately, that was never in the cards as much as I tried to convince myself that it was possible.  And so here we are.

Erin has reached the point in life where at almost 5 years of age, her heart now needs significant medical intervention to continue to function and allow her a chance at a normal life.  On Tuesday, we fly to Mayo Clinic in Rochester Minnesota where Erin will have open heart surgery on Thursday morning.  The operation is difficult and risky, and involves essentially re-plumbing her heart in an altogether different manner.  The main procedure is called a Bi-directional Glenn.  At the same time, they will close the ASD hole in her heart, and look at the tricuspid valve to determine whether it can be repaired, replaced, or left alone.  Finally, they will also look at the heart wall itself, to see if it needs repair because the tissue has become so thin.

We are told that assuming a successful outcome, she will be in the ICU for 3 - 4 days, and then moved to a regular room for several days after that.  Altogether, we expect to be in Rochester for two weeks.  Luckily for us, since we are "sick" of perfect weather here in Scottsdale, the area received almost a foot of snow this week.

We chose Mayo Clinic after very careful thought and consideration.  Our cardiologist continues to be Dr. Jeff Gossett at what is now known as Lurie Children's in Chicago.  Jeff has done an amazing job with Erin, and she feels a strong bond with him that always culminates in a big hug as she says goodbye after one of their many visits.  Were it not for Jeff, Erin would have had the first operation within a few weeks of her birth, and obviously a very different outcome.  As he puts it, everyone has done their job and gotten her to where she is older, bigger, and stronger, and in a far better place for this type of operation.  It is a Rubik's Cube of emotions.  On one hand, we know that she has a grotesquely distorted heart, one that can't continue to support her as she grows.  On the other hand, she is normal in every way, and you would never know there is anything wrong with her by observing her in everyday life, other than her occasional breathlessness that comes with play.  She knows that she needs to take regular breaks that other kids don't, and it bothers her.  But to live with her, you tend to forget about the medical issues, except when they force their way into your consciousness and hammer you into reality. It's hard to describe, really.

Our three choices of hospitals came down to Lurie, Boston Children's affiliated with Harvard, and Mayo.  We have grown very close and fond of all of the people at Lurie, and Sheila and I both serve on boards for the hospital.  They are one of the world's leaders in heart transplants for children, and is exactly where we would be headed if Erin were a candidate for that procedure.  It would be incredibly convenient to our downtown Chicago home.  However, her condition is so rare and involved that we wanted only the very best in the world.  That happens to be Dr. Joseph Dearani at Mayo.  He has performed more of these operations than anyone else, and that is what caused us to choose Mayo Clinic.  He told me last August when we went for a visit that they have only seen 1,000 cases of Ebstein's.  I thought that sounded like a lot, but he assured me that number is insignificant for Mayo.  He then went on to say that out of those 1,000 cases, they have seen less than 25 like Erin's.  That is a sobering fact.

We were impressed with Dr. Dearani from the start.  We arrived at our 4 pm appointment at 5:30, having been held up by all of the tests that Erin underwent.  He made it completely clear to us that if we needed to stay until 10 pm asking questions, he was going to stay right there and continue answering them in a patient, caring manner.  Sheila has handled the burden of interfacing with Mayo and making all of the hospital arrangements, and we have been incredibly impressed with everything we have observed thus far.  We are hoping for a very good experience based on our current interactions.

I will try and update the blog as timely as possible.  As always, we thank all who take the time to read this for their caring and kindness.  It is incredibly helpful to Sheila and myself.