After a chat with our trach nurse today, Mackenzie has been scheduled for a sleep study on Sunday night. We've noticed over the past several weeks that Mackenzie has been steadily dropping her respirations into the teens at night. It started in the 20s, and then began progressively dipping lower and lower. Her lungs sound great, no signs of infection, and over all she's doing really well... but when she hit 12bpm this morning enough was enough and I put in a call to our trach nurse.
I think right now the worst case scenario is central apnea (which I don't think is going on), and the best case scenario is the CPAP at night is making it too easy so Mackenzie is getting lazy. If the latter is the case (which we really hope it is!), then we could ditch the CPAP and see how she does. So I'm eager to get the results and see where we're at.
Sssoooo Andy and I will be loading up the van and heading to UNC Sunday afternoon. I'm glad we're getting this taken care of now since he leaves for California on the 13th. Yeeep. I'll update when we know more. Think positive!!!
Niff & Andy
We are the parents of Mackenzie, a former 26 week preemie who was born September 13 of 2008, weighing 1 pound 11.5 ounces. After being diagnosed with a subglottic hemangioma three months later, Mackenzie was trached and has since proven she is anything but ordinary. Mac also has laryngomalacia, chronic lung disease (bronchopulmonary dysplasia or BPD), hypertension, biventricular hypertrophy, gastroesophageal reflux disease (GERD), and sports a MicKey Button for enteral feedings. She keeps us on our toes and ensures Mommy and Daddy remember who’s really in charge.
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Pose it... pose it! Click!
Mackenzie loving being home.
Daddy, I think you missed my mouth.
Can I have more of that sweet stuff? I promise I'll be good!
Mackenzie, you are an inspiration to us all.
Shhh little one! Santa won't come while you're awake.
We love you more than anything, Mac.
Daddy holding Mackenzie's hand. Hang in there little sweetie. We love you!
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3 comments:
I hope it is the CPAP and not Central Apnea. And how the heck did you get a sleep study so FAST?!?! WOW!!! Good job!
Janis - We have a wonderful trach nurse who is on top of things. :o) We were aiming for sometime next week and even she was surprised that they had something available on Sunday. Good stuff!
Sending good vibes your way!!!
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