Busy Busy Month!

I'm looking at Mackenzie's calendar for the month and I'm already tired. Physical therapy on Mondays, CBRS play therapy and speech therapy on Wednesdays. An Echocardiogram on the 8th at UNC. On the 22nd she has a swallow study at 10am, nutrition appointment at noon, and 3-stage pre-op beginning at 1:15, all out at UNC. And pulmonology sleep study follow up on the 24th, again at UNC. It's not helping that Andy leaves for California for two and a half weeks.

I flipped to August and that's looking to fill up as well. So far she has a cardiologist appointment on the 12th, Optomologist on the 13th, and bronch on the 24th. By that time our regular CBRS therapist will be back, so Mackenzie will go back to PT on Mondays, CBRS on Tuesdays, and Speech on Wednesdays.

The changes made to the home vent were very minor. They changed the apnea interval alarm to 10 seconds instead of 20. So if after 10 seconds Mackenzie isn't breathing, then the vent will give her 12 small breaths a minute. They're really a whisper of a breath - nothing that could sustain her, but just enough to give her an "Oh, I'm supposed to do that!" moment. For a little while there it looked like they were going to have to put her on a set rate of 8 breaths a minute because they weren't sure about the settings. Thankfully they didn't have to go that route.

The night before last she had one "episode" (as we like to call them), but last night she didn't have any at all. I'm hoping that if she can make it to the 24th without having any, I can push for aggressive weaning off the CPAP. We were given the go-ahead to wean at our last appointment, but she wasn't ready at the time so we diverted to working on having her nap on an HME. Now, I genuinely think she is. At the end of the day when we connect her she doesn't show any signs of increased work of breathing or really "needing" to go on. In the morning, if the nurse took her off a little early and Mackenzie fell back asleep without it on, she would desat and require oxygen, and have some pretty nice belly breathing. I don't think she has required any supplemental oxygen in about 2 or 3 weeks, excluding one of her episodes last week. Right now there are only 2 times that I think Mackenzie needs the CPAP - one being her naps while we're out and about because she's still not tolerating the HME 100%, and the second being at night when she's sick. I just think if she can make it to the 24th without any rescue breaths from the vent, then we should be in the clear to wean. We have an apnea monitor that can replace the vent alarm at night, and if needed they can change the interval alarm on that too... a nurse would just have to give Mackenzie the stimulation instead of the vent giving her a breath. And if she doesn't tolerate it, then we'll go back to CPAP. But I don't want to not let Mac try if she isn't getting any rescue breaths from the vent anyway. Know what I mean?

ANYWAY! Enough babbling. I hope everyone has a terrific 4th of July! Have fun and be safe. :oD