Back to Boston

Koal had his cardiology appointment earlier this month with Dr. Shah at Children’s Mercy, and while his EKG and heart function looked good, the doc found some problem areas as well. One of the pulmonary venous vessels that was “repaired” (ie: constructed using folds in his heart) in his last open heart surgery in Boston is obstructed due to narrowing. This is causing increased blood pressure in vessels surrounding Koal’s heart, as well as elevated right ventricle pressure. After consultation with our cardiologist in Boston, both teams agree that Koal needs to return to Children’s Hospital in Boston to attempt to repair this narrowing. The team in Boston will perform a catheterization to balloon or stent the vessel that is narrowing.  Because of Koalton’s complex heart anatomy, this will be a very difficult procedure.  If all goes well and they are able to balloon or place the stent correctly, there is about a 30% it will work as Koal needs. The vessel may not take to the streching of the balloon. His vessel may strech and then go back to its narrowed state. Stents fail. They slip out of place. They don’t always hold or work as hoped. Essentially there is a 70% chance that at some point in the next 4 years Koal will need another open heart surgery to repair his narrowed vessels. During his last surgery a conduit (Gortex tubing) was placed in his heart between his right ventricle and pulmonary artery, and it is hoped that we can wait to fully surgically repair this narrowing when Koal has to have that conduit replaced 3-4 years from now. (Gortex doesn’t grow like little boys!) We pray that the surgery can wait and the balloon will do the trick. Open heart surgery takes weeks to recover from, but this catheterization procedure should only keep Koal in the hospital for 2 days! We are so thankful for this option, even if the statistics aren’t in our favor.

On September 25^th we will fly to Boston. After pre-procedure testing and appointments, the actual catheterization and a couple days recovery we should be able to return to Kansas City September 29^th or 30^th.  My (Kerry’s) parents are going to come to Kansas City to stay with Kade and Adry since they’ll be in school, and Aily will make the trip with us as she is still nursing.

Your continued prayers for Koal are, as always, appreciated immensely. We are thankful that there is an “easier” option with this cath to attempt to repair Koal’s heart, but we know there is still risk and stress with an unexpected trip to the East coast. What a blessing it is to have such amazing doctors and medical technology to have brought us here, and that continually navigate this journey with us. You, our amazing family and friends are our constant support, help and encouragement as well. Thank you…we are so blessed.

“…Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

Joshua 1:9

Koal playing in a photo booth at my cousin's wedding.

Kaol turned TWO (back in May!)

Hello! It has been SOOOOOO long since I’ve updated…ahhhhhhh, I’m such a slacker!  Rest assured, however, that the LACK of blog posts means that Koal has been doing VERY well and there’s been little to report!

MONTHS AGO, back in May, Koalton turned TWO!! We had a little party with family and it was wonderful to celebrate his two years of life.

We’ve had a very busy summer with trips to South Dakota to see Grammy Katie and Grandpa John, Table Rock Lake with Grandpa Paul, Grandma Mari and the family, weddings in Nebraska, as well as lots of activities like swimming lessons for the older kids, summer camp/school for Kade, Vacation Bible School and all the ‘traditional summer fun like swimming, picnics, walks and playing at the park. It’s been crazy busy and SO very fun! Koal loves to swim and play outside, and he is his father’s son through and through with his LOVE for ice cream (though, really, WHO doesn’t like ice cream?!?!)! Kade starts school next week, and Adry not long after, so it’ll just be Koal, me and  Aily and  hanging out together most days. Should be lots of fun for all (and a nice break for mommy with only two little ones at home 3 days a week!).  

Koal LOVED tubing! (Adry, Aunt Kristin, Koal, Kade and Daddy)

We can’t thank you enough for your continued thoughts and prayers. We are so blessed!