Introducing Waylon James, our Post Op Heart Warrior.
We finally have a name and our little boy has made it through his first big milestone - open heart surgery.
Welcome Waylon James Perkin to the CVICU (Cardiovascular Intensive Care Unit)
TLDR:
Waylon underwent an hours long open-heart surgery today.
The surgery was successful in that Waylon’s heart is now correctly plumbed.
Waylon has several days of intensive recovery.
Once he succeeds in recovery, he will learn to be a baby.
Finally, likely weeks from now, Waylon will get to go home.
Thank you all for your incredible cards, we read them as we were in the surgical waiting room and throughout our journey so far.
The details:
Hello readers, today was the big day and therefore this is the biggest, but not longest, update on the blog. Waylon successfully underwent an Arterial Switch Operation. The ASO includes the opening of his chest, switching the aorta and the pulmonary valve, and reconfiguring the coronaries. Too much detail, not enough medical expertise – but the coronaries were in a more interesting pattern than anticipated and his valve positions were slightly less favorable than perfect therefore the surgery went beyond typical game time and got in some extra innings.
The final conclusion to this is that Waylon’s chest will be left open for evaluation, swelling reduction, and otherwise general stabilizing for the next handful of days. Through this time he will be mostly sedated. Also because of this, we get to be in a special room in the CVICU (Cardiovascular Intensive Care Unit) here at CHOC. We have reached the evening hours and are approximatly 12 hours since Waylon was brought over to pre-op. We just recieved a final update from his cardiologist for the day. She has been very pleased with how Waylon’s heart has functioned throughout this process. She emphasized how his transition off of bypass was very smooth. Waylon went on bypass twice during the process as the surgical team decided they wanted to make an adjustment to his coronary arteries after monitoring how they performed initally. Basically she revealed to us that he is a rockstar and she has high hopes for recovery.
Waylon’s CVICU room is a cross between an operating room and a standard room. I kid you not when I tell you that there is likely a million dollars of equipment literally hanging from the ceiling in here, which is a step down from his main operating room today (which would have had likely 3 to 7 times that amount). This is also therefore the room where his chest will eventually get sewn up (which we hope will happen before the weekend). Because of his open chest and risk for infections – we are back to 2020 in here – proudly masked up. This room is large. Probably bigger than our master bedroom. We also have our own bathroom (yay!) but no shower. There are, after all, limits to the kind of luxury you can expect in a hospital setting. The foldout bed is comfortable and is set in front of a large window that faces east towards Santiago Peak, the aircraft coming into John Wayne Airport, and the assorted hills of Anaheim and Villa Park. All of which, since we are on the sixth floor, is nice and a relief from the interior view.
We want to thank the incredible surgical team, we got a rare glimpse into their internal deliberations early this morning as the decision to go into surgery was temporarily up in the air – their deliberations and painstakingly detailed approach on this one issue helped to reveal how intense the planning is overall for a procedure like Waylon’s. Last point for emphasis, the preplanning meeting for this surgery yesterday included nearly 80 attendees.
Dr. Glen Van Arsdell was the Surgeon and everyone reading this should say “Thanks Dr. Van Arsdell” aloud. Dr. Van Arsdell is tad curmudgeonly in his bedside manner – something I would never hold against him given that he just saved my son’s life. I wish him all the best, he certainly gets an A+ from us, but our family deeply hopes that our time with him is done.
A note about waiting for your son’s life saving heart surgery – it is very, very good to have incredible messages of love and support to read. Thank you to everyone who sent a letter back, emailed, texted etc. Joyce, who amazingly coordinated these messages of support for our son, also placed them into a wonderful book that will be Waylon’s for all time. Reading through these cards and just being able to pull out the book has been a Godsend not just today, but every day since we arrived for the delivery. Some of the cards are long, some are short and sweet, there are handcraft poems, others favorite spiritual verses or quotes even from Winnie the Pooh. They are phenomenal. Reading them aloud was a challenge for me that I greatly succeed in – if I define success as being reduced to a weeping mess of gratitude and raw emotion. I don’t often get the opportunity to speak for both Joyce and I together – but I can assure you that we both are blown away and infinitely grateful for all the time and effort put into the cards and all the exceptional messages of love, prayers and support that have been sent our way today and throughout these 21 weeks so far.
Thank you from us, thank you from Waylon.
Future blog entries will likely be more sporadic, but we will keep this blog updated for major milestones in Waylon’s progress – when he gets his chest closed, when he wakes up, when he gets to eat, when he goes home, when he memorizes the first ten digits of Pi, etc. PS. While not posting photos of Waylon post surgery, enjoy this photo of him with a clenched fist of resistance from right before he went it. Additionally, photos of his new room decorations and the assortment of gear in our room.
Love you all,
The Perkin Family
