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.
www.carepages.com 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 surgery..how 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 news...my 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
