Tomorrow is new trachea day! No more stir-straw-sized airway, which will make us all breathe a little easier. My mind is a little (a lot) foggy… the past few weeks have truly been a whirlwind…but I wanted to get something on the blog. There are many people out there supporting us and asking for updates, which we appreciate so very much.
Getting up to speed… Ben had a second cerebrospinal fluid leak in early December. The neurosurgeon contemplated taking him back to surgery pretty much immediately, but couldn’t because Ben had a nasty cold. The cold was actually so bad that the ENT considered admitting Ben, but decided he was okay at home with me regularly checking his oxygen sats. Oh, and Ben’s body started rejecting his sutures (“So crazy! Barely ever happens!” they said) so we had to manage gaping, oozing holes in his back. Such a lovely season in our lives. But the good news – a diuretic, which he just weaned off of after three months, was able to reduce the pocket of fluid and surgery was not needed. AND we were able to travel to Hilton Head to be with my family for Christmas, which was a very much needed time away for all of us.
Right after Christmas, I traveled to Cincinnati for Ben’s scope with the complex airways team. Taking into account all we’d just been through during spine surgery, with most (or all?) of the complications being a result of Ben’s tracheal stenosis, Dr. Rutter decided it was time to move forward with scheduling tracheal reconstruction surgery. Honestly, I was incredibly relieved to finally have the decision made.
We were at the mercy of the doctors’ schedules for a surgery date. It’s not easy to coordinate such specific surgeons – one to open Ben’s chest, which is full of scar tissue from heart surgery, and the other to perform the actual slide tracheoplasty. We have the director of the heart transplant program and the guy who basically perfected the slide tracheoplasty, so to say we are in good hands is a major understatement. Ben is in the very best of hands!
Quick refresher on what happens during a slide tracheoplasty from a doctor who trained with our surgeon (full blog post here
“We divided the narrowed section of trachea in two and then split the trachea up the front on one end and the back on the other,” said Dr. McMurray. “We could then slide the two ends of the trachea over each other and sew them together. This made Finn’s trachea shorter, but much wider, allowing him to breathe and grow,” he added. “This is extremely delicate work, and something for which you train your entire life.”
So, here we are, less than twelve hours away from the surgery we’ve anticipated for a year and a half. Ben has been on major lockdown to stay healthy. No school. No therapies. Very few public appearances. This was not easy for our little extrovert and really limited what we could allow our other kids to do. But, he stayed healthy… until Friday when a stuffy nose started. His pre-op doctors are hopeful this will not affect surgery, but man it has me on edge. On top of that, I have some sort of allergic reaction rash that is incredibly uncomfortable and really hideous. When the urgent care doctor prescribed steroids she said “It will probably make you a little jittery, emotional, and cause difficulty sleeping. So probably they way you’re already feeling.” Yep.
Surgery is scheduled to start tomorrow morning at 7:30am. The OR is booked for six hours, which is actually a lot less time than we originally anticipated. Our team did the same surgery yesterday (Saturday!) on a newborn, so operating on a five-year-old will be no biggie for them, right? The cardiothoracic surgeon said to anticipate anywhere from ten days to several weeks in the hospital. That’s quite a range, so really we will just take it one day at a time. I’m already missing my other kids so much and cannot fathom going weeks without them.
We genuinely feel so covered in love and prayer… there are people praying for Ben all around the world – some that I’ve never even met! He is a real life miracle many times over and we get a front row seat to tomorrow’s miracle.