I have spent the last two years worrying about Alex's breathing post stroke. Everyone who has been there done that usually says put a CPAP on him or better yet, put him on a vent at night. I wish it was that simple. Yet for Alex, anything like that, he does not tolerate. He pulls at his nasal cannula in his sleep and just about rips his nose off. He can not even breathe through his nose. Just a pair of sunglasses lasts about 5 minutes on his face. So imagine a mask at night. So we do the best we can to blow oxygen at him and pray that it is all he needs. But yet I still have times where I'm afraid to leave the room because his breathing is so shallow.
Today we went to the ENT. Alex's neuro(you know, the one that left) and his pulmonologist, referred him to Dr. Mair to see if there is anything else blocking his airway on top of the O2 dropping at night. Of course I knew they meant he was gonna be scoped. Alex has had major drainage, trouble managing his secretions, and at times sounds like he snoring when he is awake. And of course we have the swallowing issues and risk of aspiration. So today we were hoping for clear cut textbook answers. I know...funny! We are never textbook. First of all, this kid did amazingly well with the scope. As many of my Facebook prayer warriors prayed along side us in Facebook world. Alex did awesome. Both the doctor, the PA, and I cheered him on and he let this man stuff a thin tube up his nose and actually look around a bit. Take in mind at the same time, CAMDEN is facing the wall hiding his eyes from his best buddy being tormented. You gotta love this dog when it comes to trauma. He doesn't do gruesome tests very well. But Alex survived it. And immediately following the test, he grinned ear to ear because I told him how proud I was of him. He was amazing! He even laughed after it. Immediately after the scope was out, the dog was back licking his hand. He just couldn't watch the procedure itself.
So basically Alex does not have any structural blockage. He is extremely low tone in his airway, tongue, epiglottis, etc. This is all because of that damn stroke. Hence sounding like a snore sometimes and coughing. He is thankful we are doing the Oxygen at night, but he also says that there is no guarantee that he is taking consistent breaths at night. His tongue could possibly block his airway. You or I would startle and cough and jump back on track. Alex sadly might not. There are some surgical things they can do like clip his tongue and shave his palate. The problem with that is it creates a bigger opening and more secretions that he can possibly aspirate on. He was literally coughing/aspirating is what he called it, on his secretions in the appointment. That leaves one last option as a trache. Now, of course we are not at that point. We are hoping that what we are doing now will be adequate enough. But now trachea talk has been laid out on the table again and my heart once again breaks into a million pieces. His breathing issues are just that serious. All this was discussed before he even had this test at Chapel Hill with our mitochondrial specialist, but Matt and I brushed it off. Who would even want to think the thought about their child.
For now, that is it. We are doing nothing different unless Dr. Ashe sees something in follow up sleep studies that point us in a more drastic direction. We are also waiting to hear more on some off numbers on his bloodwork. But hopefully, this is it. MRI came back with no changes since his last one. And his MRA showed all arteries flowing well for the most part. Just thank you for all your continued love and prayers. Not sure what we would do without them.