Cardiology appointment 3.7.16

Koal had another follow up cardiology appointment with Dr. Shah at Children’s Mercy this week. As usual, he was sweet and brave and did great for his EKG and echo! Yay!  He continues to grow and is up to about 33 lbs, and while that is fantastic, it does mean it’s time to consult with Boston and make some decisions about what is next and when.  We’ve know this time would come and we’ve just been waiting, as it’s not an “if”, but just a “when”, as far as another open heart surgery and other interventions go. Dr. Shah sent all of Koalton’s most recent information and heart images to our team in Boston and we just received word this morning that the team there agrees that it is time for surgery to replace Koal’s conduit and perform a revision on the baffle in his little heart.  Dr. Shah and our Boston team, Dr. Powell (cardiologist) and  Dr. Pedro del Nido (surgeon), believe they should be able to place a conduit that will be big enough to last Koalton into adulthood, so there’s really no reason wait.  We will of course weigh things like Dr. del Nido’s schedule as to when he is available and feels the timing is right, and Koal starting Kindergarten in the fall and what that might be like to have to remove him from school for a long period of time if we wait until then. The reality is, unless fall is a better time for Dr. del Nido and our medical team in Boston, it is likely that this summer (or sooner!) will be the right time for Koalton to have his next major open heart surgery.

Dang.  We knew it was coming.  It was only a matter of time...and as I’ve said before, it just means he’s growing...and that’s a good thing!   BUT, it’s still hard to swallow now that it’s ACTUALLY time to make decisions and prepare for a trip to Boston and major surgery for sweet little Koal.  There’s comfort in the familiarity of having done this before...the planning, the travel, navigating Boston and the hospital, knowing the incredible team of doctors there, etc.  But no matter how many times you go through it, handing your baby over to a surgical team asking them to perform a miracle to save your child’s life NEVER gets easier.

We, as usual, treasure you prayers during this time.  We have complete peace about these decisions, this surgery and the situation surrounding all of it.  We’ve always known this time would come, and we are thankful for incredible modern medicine that allows complex surgeries like this to be possible for our little man. Please pray, if you will, for the details...the timing of surgery, the planning that needs to happen, the pre-op tests and procedures.  Pray that God would keep peace and comfort in Koalton’s heart as we prepare for surgery.  He asks me all the time with such excitement, WHEN will he get to ride in an airplane and train again to go to Boston. It’s so endearing...and he’s genuinely SO excited to get to do those things. Unfortunately he doesn’t understand what goes along with the fun and exciting planes and trains of Boston. He doesn’t remember the trip at 7 months old when we traveled there for his double switch surgery.  He doesn’t remember (thankfully!) the pain of recovery or confinement to a hospital bed. He doesn’t remember the tubes and drain lines and IV’s and monitors that will be attached to him. We pray for God’s wisdom as we help prepare him for all aspects of this trip, including both the excitement of the travel AND the challenge of the surgery and recovery. Please pray that God will prepare and protect his little body in the months leading up to our trip, as well. We need him to stay healthy and remain stable enough that nothing becomes urgent in regards to his heart. We will of course keep updating here as plans are made and things fall into place. We look forward to seeing God’s fingerprints on every detail of our lives over the next few months. Thank you for your continued prayers and support. We appreciate you all so very, very much!

I will praise you, Lord, among the nations;

   I will sing of you among the peoples.

For great is your love, reaching to the heavens;

   your faithfulness reaches to the skies.

Be exalted, O God, above the heavens;

   let your glory be over all the earth.

Psalm 57:9-11

Just a couple more quick things...Koal has a new baby sister! She's not ALL that "new" any more as she just hit the 2 month mark, but Koal is such a FANTASTIC big brother and we are all enjoying her immensely!!  Auvy Carolyne was born January 3, 2016 @ 5:35pm.  She weighed 9lbs 5oz and was 19 inches long. We are so in love! 

Also, on a completely different note...Koal just finished his annual Jump for Heart program at his preschool!  Here are a few pics of the activities and "jumping" he did.