I'm not sure how to start this post. I can't think of anything clever so I will just start. Yesterday we started with a new home health company which is anxiety producing because you have to learn to trust a whole new group of people. Dominic gets private duty nursing hours and we have been with the same company since he came home, but just recently we switched to get better shift coverage. Change is hard. I have learned you can never assume what a nurse is experienced in, so this time I have a sort of check list of things I have to watch the nurse do before she is independent. I spent 2 1/2 hours checking one of the new nurses off on how to do everything last night, including 2 trach changes. The first was planned; I wanted to see how she did. The second was soley the fault of this clumsy woman right here. I tripped over the vent tubing and fell, in the process pulling the tubing off the trach. He looked fine though so I got back up, hooked the tubing back up, and started to change his diaper. It was dark in the room, but even with the small lamp I noticed his lips were turning blue and he was struggling. I flipped on the light and sure enough I had decannulated him. Awesome. So, I moved fast and changed the trach and everything was fine. Phew was I scared. That would be my 3rd time to do that. Mike has done it zero times, as has everyone else. Just me, his clumsy, two left feet having momma. The first was in the ICU right after he got the trach (before I was trained, I just screamed), the second was in the TCU when we were training on how to care for him, and now here at home. Awesome. After everything was done I said to the nurse "well, that is an emergency trach change." Good training I guess.
It sucked last night for many reasons, but the biggest one was the reminder that he really does need the trach and vent. It was only out for a matter of seconds but in the short time he turned blue. I hate the trach. Well, I don't hate the trach, I love the trach (it is keeping him alive), but I hate what it represents. I hate that he can't breathe on his own. I hate that I can't just carry him across the room without pulling 50 lbs of equipment behind me. I'm thankful it is doing the work of breathing for him. I hate having someone in our home all the time. I'm thankful for the nurses though, there is no way I could do it without them. I'm tired.
In Jesus and Mary,