Much better!

I have to admit, this morning I was a hot mess.

For starters, I didn't sleep well last night (hence the blog post at 4am). Then when I decided to pop out of bed and get in the shower, I discovered that our day nurse wasn't feeling well and desperately needed to go home. So off she went. In the meantime I have a sick Mackenzie and am doing nebs every 4hrs until we can get in to the pediatrician tomorrow. Exhausted from lack of sleep, and on edge waiting for Mackenzie to really act up respiratory wise, the morning didn't go as I would have liked.

I got an email back from our trach nurse that basically said not to hold our breath on fighting the decrease in nursing hours, and not to wean Mackenzie at ALL on her CPAP until after the pulmonologist figures out why all of a sudden Mackenzie's having apnea issues. She's had 2 episodes a day for the past two days, one on the trach collar that dropped her sats to 78% that had her on oxygen for an hour. I highly doubt we'll be able to wean after the appointment, and I'm quite nervous that the pulmo will want to put her back on a rate at night (SIMV ventilation instead of CPAP). So that news, coupled with what was already going on, was enough to get me feeling pretty deflated. Okay, extremely deflated.

But! I'm feeling much better now. I spent a great day with Mackenzie and while we didn't get in all her developmental exercises, we did have fun and enjoyed ourselves. We came up with a plan about the 12hr nursing by having 2 shifts of 6hrs each - one from midnight until 6am and the other from 6am to 12pm. I'm rarely asleep before midnight anyway and with a daynurse here until noon I can squeeze in any local appointments with Mackenzie in the AM. For trips to UNC we'll have to cross that bridge when we get there, but more than likely Andy will have to take off. Hopefully once we really get Mackenzie stable the trips to UNC will be less frequent. Not that she's not stable now - it's not like she's going into respiratory distress - but she's throwing curve balls left and right. I hope our current nurses are willing to take those hours because I hate to loose them, but at the same time those are the hours that have be to done for our family.

As far as the CPAP goes, oh well. I was hoping for decannulation (removing the trach) this year because of how "vocal" she is around her trach (that being a sign that she's passing air past the hemangioma), but it's okay if that's not what is in her cards. I am terrified to think of what the apnea could bring as far as how long the trach is needed, but Mackenzie is okay with it. If she fought us during trach changes or hated anything trach related, my heart would break... but she's a trooper and doesn't mind. I just need to go back to living in the moment - focus on getting through today instead of worrying about tomorrow.

So anyway, just wanted to share. My craptastic day has turned into something wonderful and fun. I'm confident that the reduction in nursing hours will work out well, and everything else is going to fall into place in its own time.

Whoever said this was an emotional rollercoaster really hit the nail on the head.