Here We Go Again

Time to resurrect the blog! Here we go ago, it's time for surgery #3. The countdown has started and we are less than 2 weeks away from Kyler's Fontan surgery. This surgery finishes the re-plumbing of his heart to make it work the best that it can with the defects it has. Medically speaking, it connects the inferior vena cava to the pulmonary artery so that the blood from the lower half of his body can go to the lungs to pick up some oxygen. This should help his oxygen sats raise from the low/mid 80s to the low/mid 90s. ("Normal" sats are above 94). This should help him be less purple/blue and more pink, and also help him not get tired so fast while he's playing.

I've been asked 2 questions pretty frequently:

1. How long will this one last/will he need another surgery? Answer: we don’t know. We hope that this procedure buys Kyler a lot of time...like 30+ years would be amazing. But we also know that the next step if this fails for any reason is a heart transplant. We are praying that this one goes well and holds for a really long time, and that soon there will be even better medical advancements that will benefit Kyler and those with CHD.

2. How are you doing? Answer: I don't know. Jacob is actually feeling pretty positive about things so I am trying to ride off of him. Honestly, I have been struggling with this one, and due to some other things. I have managed to get myself stuck in a pretty nasty spiral that I'm trying to climb back up from. It's been difficult, but I like to think I'm making some progress. 

Getting through Kyler's heart cath a couple of weeks ago was a big step for me. I survived the horrible waiting room (I seriously dread that place) without going too crazy. Jacob had some important work things he couldn't leave so he stayed in St. George with Kallie, so it was just Buddy and me. Luckily his cath was pretty quick and didn’t take any longer than what the doctor told me to plan for, so I didn't have to wait in that stupid room any longer than I anticipated. Kyler surprised me with how fast he bounced back, and that he was only sad about the long day at the hospital instead of playing at Uncle A.J.'s house with Andi and Aunt Robyn. He was mad at the pressure dressings and tape that we had to take off the next day too. My fingers are crossed that surgery goes better than I fear too and that recovery won't be terrible.

I already know that Kyler is much braver than I am, but he is also helping me through this journey. I am planning on updating this blog a little more because writing it out is therapeutic for me. And hey, if our journey can help anyone else or raise more CHD awareness then I am all for it. Please reach out with any questions that you have. We love talking about our Brave Buddy and our journey.

Sleepy boy after his cath

Awake and just laying around waiting...and waiting

Picture from his cath showing the Glenn and narrowing in the PA