It's hard to remain hopeful after doing so many of these procedures without great results. This will probably be our last effort at making decanulation this year. We hope and pray that Dr. McClay will be able to remove more tissue and that that will do the trick, or that God will reveal to him whatever it is that is holding Luke back. We are frustrated and mystified as to why we have not so far been able to discern the reason why Luke has not been able to sleep well with his cap on. One reason could be that the soft tissue in his airway just needs to strengthen and harden, which will only happen with age. This is the opinion of Luke's Pulmonologist. Or there could be something wrong that can be fixed surgically. So far we haven't been able to figure that out, but I believe that this is probably the opinion of the ENT and that's why we're doing one last Bronchoscopy before his sleep study on 7/31.
A great deal is hinging on tomorrow and the next three weeks. Our highest hope would be that tomorrow's surgery is more successful than we expect, that Luke is then able to breathe well asleep with his Trach capped. In that instance, we would be able to pass a sleep study, allowing decanulation on 8/13. If all of that happens, Luke's third and final heart surgery would be delayed until Spring 2013 when he is Trach free. If surgery does not help, Luke's airway will stay the same, and Luke will not be able to pass a sleep study. We likely will cancel the sleep study and the subsequent Bronchoscopy on Aug 13. Then we will have conversations with Luke's cardiologist for scheduling a heart catheterization and heart surgery sometime this fall. Still having a Trach will mean that Luke has a higher risk of infection during that stay in the hospital, so it is preferable on that front as will that Luke's Trach is removed.
We would love for our family to join with us in praying for the following: 1) that the problem with Luke's airway will be specifically and definitely revealed. 2) That the problem would be immediately (meaning tomorrow in the OR) repairable. 3) That the anesthesiologist will be able to get the necessary IV line on the first try. We are concerned because Luke is not allowed to have anything in his stomach after 8:00 tomorrow morning, and we are worried that he'll be a little dehydrated for surgery (fluid makes your veins plumper) and he is a hard stick anyway. 4) that the capping trials while sleeping over the next three weeks go very smoothly and easily. 5) that Luke is able to pass a sleep study on the 31st and that we are able to decanulate him on Aug 13. And 6) That God's timing is perfect for Luke's third heart surgery, whether it be this fall or next spring.
Thank you so much for your prayers and your support. Love you!
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