Sleep Study Results

I'm sorry it's taken me so long to get you this update. I've had several people ask if we have gotten the results from the sleep study and I can finally say, "yes we have." We actually heard from the pulmonologist's nurse on Friday morning, but the results we had left us with more questions. So I was waiting to see the ENT today to get further clarification before updating you. On Friday we were told that he slept really well the first half of the night, when his trach was open. But during the second half of the night, when his trach was closed, he didn't sleep as well and he had some obstructive apnea. So it was determined that he is completely fine to sleep without the vent and without oxygen as long as his trach is opened. My question was how much obstruction did he have and how much was caused by the trach being in his airway. Also, if the trach were removed, would that take care of the obstruction. The nurse was supposed to talk to the doctor on Friday and call me back that afternoon, but I never heard back from her. So today, we saw the ENT. We like this doctor better anyway. She is just as anxious to get rid of the trach as we are, so I knew that we could at least come up with a plan. So she looked at the results and gave me the specifics from the sleep study. With his trach opened, he had approximately 5 central apnea events per hour (which is about what he had before) and he had 3 obstructive events per hour. With the trach closed however, he had 3 central apnea events per hour (less because he didn't sleep as much with his trach closed) and 13 obstructive events. His lowest oxygen saturation while opened and closed was 88%. That's actually not too bad. But it is of some concern that he had so much obstruction with the trach closed. So we came up with a plan. We are going to start capping John's trach for all waking hours. Then on July 20, the ENT will do a broncoscopy on John to check his airway for any kind of obstruction. Once that is done, Tommy and I will meet with her to discuss how we want to proceed from there. We will discuss the risks of decanulating John and whether or not it is worth doing. So, we didn't exactly hear what we were hoping to hear, that he is absolutely ready to have the trach removed, but it's not completely ruled out either. It just may not be this summer like we hoped.