Wednesday, May 23, 2012

Update on Tyler

We posted the following update about Tyler on his Care Page. Please subscribe to his care page updates at
and you will receive updates in your email inbox as they are posted. We haven't really posted much in the last few years while Tyler has been doing so well, but with everything going on with his heart in the next few weeks we plan to just update there and let the website email the updates to our family and friends. and the page is named simply tylerthomas (no spaces or punctuation)

From Tyler's Care Page:

Hello Friends-

Wow, has time flown by and we've been just enjoying the ride! I cannot believe that my little Tyler is growing up so fast.  As a newborn in the CICU, I remember just praying for the opportunity to see him take his first steps, say his first words, go to Kindergarten, and it was hard to look at my little newborn boy and imagine much beyond that point...but we are here now and Tyler seems to be pushing full-steam ahead for the next milestones!

To play catch-up a little bit (It has been about two years since we've updated this care page!) Our family welcomed a new baby sister this past fall. Savannah Lynn Thomas was born in October, and Tyler is loving his new role as a big brother. Both James and Tyler think everything baby Savannah does is so cute and she just adores her big brothers.

The past couple years have had plenty of cardiology check-ups.  His  heart condition has slowly been deteriorating, so these check-ups to occur more frequently now, only about 2-3 months apart as we knew that  more surgery would be on the horizon.

Well friends... it is time to start keeping up this care page again. This page is a lifeline of support for us, we love all the messages of love and encouragement and well as a communication tool that helps us share updates on Tyler's health with everyone quickly and easily.

Last week, Tyler went to the cardiologist for a routine check-up and we learned that the cardiothoracic  surgeon that is doing Tyler's next open heart surgery, the same surgeon that has performed his other operations will be moving to New Haven, Connecticut to take a position at Yale-New Haven Children's Hospital (great news for them but very sad for us to see him leave). Our doctor explained to us that Tyler's heart was going to be needing further repair "soon" based on what she was seeing on his latest Echocardiograms and his O2 saturations hanging out in the low 80s/high 70s. Well, we've been hearing "soon" for about 3 years now, so that didn't really catch my attention until she clarified that "soon" meant the next 6 months. She further explained that Tyler's surgeon was leaving for this new position at Yale in about six weeks, so we might want to start our research and start making plans to travel for this operation if we wanted him to do the surgery (which of course was the best option for Tyler, even though it would be very difficult). There was a small chance that our surgeon would be able to fit Tyler into his schedule before he left, since basically from a medical perspective 6 weeks and 6 months aren't that much of a difference in the grand scheme of things...but we were told not to get our hopes up, he is a very busy surgeon and his schedule was probably already packed full, and most likely we'd have to just follow him up to New Haven in order for him to do the heart surgery. (Which at this point in the conversation my mind was starting to panic as I realized I had no clue where New Haven even was on the map and that neither 6 weeks nor 6 months was long enough for me to be ready to hand Tyler over for another open heart can anyone ever prepare  for that?)

This week we had a voicemail from our cardiologist. She contacted our cardiothoracic surgeon , and she must have been really persuasive because  he agreed to operate on Tyler's heart before he leaves for Yale. Wow. When I first heard the message, I wasn't even sure what was going on or if I had heard correctly, but I will say it is with mixed emotions I am still digesting the Kindergarten graduate will be having major open heart surgery before the end of his first summer vacation. Bart and I are scared...really scared. I don't know how I will have the strength to do this, again. I don't know how I will explain to Tyler that he is going to have to have this surgery and that it will be painful and difficult. How on earth do you explain to your sweet little boy that something that is going to hurt terribly and be scary is so necessary? And then the recovery...and keeping him healthy, because if he is sick they would have to postpone the operation. How do I answer his questions without scaring him more? How can I comfort him when I can't be sure I can even hide my own fear? Two weeks ago I was oblivious to the plans this summer would hold, just trying to schedule  in the day camps and play dates,  wondering if would we make it to the beach this year or  just go camping?

Now I all I know is that we are so grateful that his precious little heart will be in the hands of our Childrens Healthcare of Atlanta Sibley Heart Center team that we have come to love and trust.

Please keep Tyler is your prayers. Tyler will be having a few procedures in preparation for his major operation and we've been advised that a 6 yr old should only be told about procedures a few days before they happen.  (We want to leave the worry in the hands of the adults.) We welcome your questions and well-wishes, but we ask that you don't talk to Tyler about any of this yet.  

Thank you all for your love and prayer!

Love, Bart and Tanya

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