Tater is scheduled for his
tracheotomy tomorrow afternoon (Thursday, the 14th). He is doing great and that has made the decision to get the trache that much harder. As well as he is breathing with only oxygen, when he gets sick again we're going to be right back where we were 2 weeks ago. Everything he goes through takes more and more out of him and he has no reserves. Now even the smallest cold will put him back in the PICU. If Tater has the trache we will be able to suction his lungs and hopefully avoid them collapsing because he has a mucous plug. And even if Tater were to have to come back to the hospital then they won't have to intubate him for a ventilator-they can just hook up the tubing straight to the trache.
The doctors, while encouraging, have really left this decision up to us. There’s no definitive way to determine if this will solve all his breathing problems and he could very well still end up on constant ventilation at home. I spoke with Dr. Mama for a good while last night and she assured me that whatever decision we make, it doesn’t mean he won’t end up on ventilation anyway. We may get there sooner with a trache but the journey to ventilation will be much more hellish without one. With trache ventilation Tater won’t have anything attached to his face, he’ll be more mobile and we can have a semi-normal routine. He’s miserable on this BiPap machine because it has these huge nasal prongs that push his nose up and makes his nose so sore and he can’t go anywhere other than the 4 feet the BiPap tubing allows. So if we can make his life easier and more comfortable, then we’ll do it.
We're confident this is the right thing for Tater. But we're also scared because this IS surgery. It will only last 30 minutes but he will have to be under general anesthesia and he is at risk for a rare, but serious, complication of anesthesia (called malignant hyperthermia) due to his underlying muscle condition/hypotonia. The surgeon and anesthesia team know this and will take precautions and not use certain drugs, but it’s still very scary for us to send Tater to surgery knowing there are extra risks involved. I met with the surgeon who will perform the tracheotomy yesterday and was impressed (he’s actually an pediatric
ENT). And Dr. Mama said he’s by far the best ENT she’s ever met and she’s been a few places (plus we trust her implicitly). So while we’re good with all this and know it’s the right thing, we’re still scared and worried and can use all the prayers and positive energy you have.
