Ball is Rolling

Hello everyone, I have great (although anxiety provoking!) news! At the last post, I explained that Dr. McClay, our ENT surgeon, was going to collaborate with some colleagues to decide what would be the best plan of action for our little man – either a T-tube for 6 months or a major airway reconstruction surgery with a horrific recovery period.

David talked with Dr. McClay on Tuesday afternoon, and they’ve decided to go a different route than either of the previously discussed options. On Tues, Aug 21, Luke will undergo another major airway reconstruction surgery. Dr. McClay will again cut out the floppy tissue—at this point I’m not sure if he will just take out the floppy tissue or remove part of the airway cartilage as well. He will take a piece of cartilage out of the inside of Luke’s ear (you won’t be able to see where the cartilage was taken from, so his ear won’t look weird) and place it over the resected airway tissue. My understanding is that during the surgery, Dr. McClay will take out Luke’s trach. I’m not sure if he will stitch up the stoma or let it close on its own, but bottom line is that the trach will be GONE!

During recovery, Luke will be intubated (he will have a breathing tube inserted either through his nose or his mouth and connected to a ventilator). We are expecting a stay in the Cardiovascular Intensive Care Unit (CV-ICU) at Children’s Medical Center for about a week. Our hope upon hope is that when it comes time to extubate Luke (turn off the ventilator and take out the breathing tube), his airway will be completely healed and he will be able breathe well, both awake and asleep, without a trach or any other breathing apparatus. After our week long stay in the ICU while he is intubated, we are expecting another few nights either in ICU or on the floor while they monitor Luke and ensure that he is breathing well enough to go home without a trach. (My heart is fluttering as I type this!!!)

We love this surgical option for many reasons. First, my understanding is that this option provides much less risk to Luke’s vocal chords as the previously discussed option did. Second, the recovery will be much easier: Luke won’t have to have his chin sutured to his chest during the recovery as he would have in the other option. Third, this surgery doesn’t burn any bridges: Dr. McClay is fairly confident that this surgery is just what Luke needs and that he will be able to function without a trach afterward. If it doesn’t work however, we will have to re-trach Luke, but we can always fall back on one of the other two previously discussed options (the airway resection, or the T-tube).

Luke is also slated for another bronchoscopy about a week after the airway reconstruction. It is likely he will still be in the hospital for this, so they will merely take him from his room to the OR and then back to his room. I’m assuming this one and the next one, scheduled for Sept 24 will be just a check to make sure everything is functioning like it’s supposed to. We would welcome visitors to the hospital, but please call or text one of us to let us know you’re coming.

As you can imagine, David and I and our families are cautiously optimistic. This will be Luke’s second airway reconstruction in which he was supposed to be decannulated afterward. We keep saying to each other, “We’ll believe it when we see it.” We are very hopeful that this surgery will do what it’s supposed to do, and we’ll go home with a trach-free kiddo as we’ve been longing to do for three years. I at least, however, am very cautious about getting my hopes up. We would love for it to happen this time, but it hurts too much to expect it and then not receive it time after time.

Please join in praying with us for a maximally effective surgery on the 21st. We would love prayers for Luke’s anxiety level the morning of surgery, and our stress and anxiety throughout. We would love prayers that recovery would go smoothly. We don’t know if Luke will have to be put into an induced coma, or restrained, or sedated throughout the recovery. We will rely on your prayers for sustenance and endurance from our God. Pray for safe travels for our family members and friends who will be traveling to the city and to the hospital during this time. Most of all, as always, we pray for God’s will to be done in this and every medical situation that our family endures. We above all desire for God’s love and awesome power to shine through us to those who do not know him.

We always thank you and treasure your prayers, thoughts, words, and acts of support and encouragement. We could not get through any of this without our Christian family!

Blessings,

Rachael, David, and Luke