We took Luke in this morning for Dr. McClay to have another look down his airway. This was supposed to be Luke’s decanulation day, but Luke has been struggling quite a bit with the cap, especially for naptime. We haven’t been able to get him to fall asleep with the cap on or cap him at all when he’s sleeping. One of the requirements for getting Luke’s trach out is to have him pass a sleep study with his trach capped. So we arrived at Children’s Medical Center at 7:00 this morning with no expectations for decanulation, but hope for the doctor to be able to give us an explanation for why it’s been such a battle to get Luke capped around the clock.
They finally came and took Luke back to the OR around 9:30. They called David and me back to the consultation room about 30 minutes later. So here’s the scoop:
There are two possible physiological reasons why Luke is struggling so much: 1) There is a bit of floppiness in the airway tissue below the area that was reconstructed in May. This floppiness could be causing his airway to constrict somewhat. 2) Scar tissue on the vocal chords could responsible for constricting the airway somewhat. Vocal chords open when you vocalize and close when you breathe. Scar tissue on his vocal chords is causing the airway to be more narrow than usual, so this could be why Luke can vocalize very strongly but can still have difficulty in the breathing department. Good news is that there was no granulation tissue present in the airway for Dr. McClay to remove (that’s a first). There was a portion of tissue in the airway that looked suspicious, but McClay believes that this is a small area still swollen from the frequent surgeries/broncoscopies rather than granuloma. In any case, it isn’t obstructing his airway enough to cause him difficulty.
So what’s the plan? First, more waiting. We’re going to wait one month to see Dr. McClay in his office where he’ll “soft scope” Luke to discern the amount of damage to the vocal chords that scar tissue is causing. It’s difficult to tell while Luke is under anesthesia, so a soft scope done while Luke is awake should give us more information. Meanwhile, we have the go ahead to push Luke a little harder wearing the cap. The hope is that air pressure created when Luke uses the cap will over time strengthen his airway and resolve the floppiness. No one can tell us how long that will take. Again, we’re on Luke’s timeline. Part of our problem has been wondering whether Luke throws fits when we try to cap him because he’s really having a difficult time getting enough air, or if he just doesn’t want to do it, so he cries to make us take off the cap. Because we’ve been fearful of depriving him of air and harming him, we usually relent rather than making him cry through it. We feel better about pushing him harder now that we know pushing him will only make his airway stronger and not torture him.
Obviously the hope is that using the cap will help strengthen his airway, and the only place we have to go from here is up. Stronger airway = more comfort with the cap = passing sleep study = decanulation. We have the rest of July, August, and probably most of September before we hit a deadline. McClay told us today that he won’t decanulate in winter. If we can’t get it by September, there’s another option. McClay talked a bit about a surgical procedure he can do to correct the floppiness. This would take place in the spring and would result in decanulation during the same procedure.
Realistically, we’re looking at possible decanulation later this summer/early fall. It’s possible that we’ll have to wait another several months until the spring. Meanwhile, we’ll most likely be getting to take Luke home to sleep in his own bed tonight (and us on ours!) and start with capping bootcamp again tomorrow.
Please pray with us that we can be successful in capping, passing a sleep study, and decanulating by September. Every day we long for the time Luke’s trach can come out, and we pray that we won’t have to wait another 8- 9 months before it can truly happen for our family. Please pray that God gives us as Luke’s parents wisdom in pushing and challenging Luke to wear his cap without harming or discouraging him. More than ever, we need to be firm, disciplined, and loving parents to this vibrant and willful two year-old.
Thank you for your prayers and for waiting with us. We truly love all of you.
Blessings,
Rachael, David, and Luke
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