The Next Phase of Our Lives

We started the next phase of our lives today with the beginning of our training in how to take care of Mason's trach tube and site. In about an hour and a half, we learned how to take a tube out, put one in, put on the "ties" to keep it in place, suction him, and help him breathe with a bag if necessary. We were reminded that he won't be able to cry, so we have to listen for the ventilator alarm going off to tell us if something isn't going well. We were informed that some kids are sneaky and pop their trachs out to get attention - I told them "Mason won't do that!" At least I hope not!! Really, it's not that much more involved than what we were doing before, just different. Plus, we have a long while to learn how to do it all. We'll get the hang of it fairly quickly, I think.

Mason had a fairly good day with continued sedation and paralytics. He was able to wean down on the oxygen to about 67% at one point, then has needed to go up and down based on his position and how much we do with him (sponge bath, diaper changes, etc). They are wanting to keep him sedated and paralyzed a little longer so that the trach site has a chance to heal a little bit before messing with things. We think it's a pretty good plan. Really, the only real change today was the removal of the heart pressure probe. Since being in the catheterization lab nearly 1 1/2 weeks ago, Mason's had a pressure probe in his heart (via his neck). While it is a risk to keep it in this long, it has given us good information about Mason's desaturations and his response to the heart medications. They have left the sheath through which the probe was placed, but that will be removed tomorrow. Slow and steady with the changes.

Mason has also begun another phase of his life - detoxification. Because he's been on heavy sedatives and a good narcotic for the last 2 weeks, he is going to need a little help weaning off. He was started on Methadone and Ativan today in hopes that he will be able to wean safely off of his Fentanyl, Versed, and Dexmedetomadine. Hopefully we'll be able to do it without any withdrawal symptoms.

Overall, I don't expect major changes over the next few days. Some of the doctors are a little more ambitious about working on waking Mason up and some are more conservative. He's shown us that he does still desaturate when he is not paralyzed or heavily sedated, but not anywhere close to how bad it was before he was intubated or before the trach. With some time and some adjustment, I think he'll be able to get used to the tube and figure out how to swallow and move in this next phase of his life.