The results from the sleep study came back and the trach nurse gave me a call. Mackenzie's having central apnea episodes. She's recovering on her own from them and isn't having any major desats (she went down to 88% once, and had a few minor desats to 93 and 92 but overall her sats were great). The trach nurse did, however, fax over new orders for our DME company to come over and dial in a back-up rate on the home vent.
I have a million questions, but the person who will have to field them is the pulmonologist. The trach nurse was confident that most kids get over the central apnea episodes with time, and some only require a little oxygen at night. She didn't know if this will effect having the trach removed and felt the pulmo would be best able to address that.
Right now, I feel like I've been socked in the gut. It's really not a huge change at all, but I had my hopes up on ditching the CPAP at night. I could picture in my head the DME company picking up the home vents and throwing a mini-celebration. It was going to be one less thing holding us back from decannulation. I wanted it so badly that now I almost feel defeated. Which is silly. It's not the end of the world and it's certainly not a gigantic leap backward by any means, but it's a whole new realm of unknown and questions for us.
Right now our follow-up with the pulmo is scheduled for the 24th, but the trach nurse is going to talk to him and see if he wants us to come in sooner to address the new findings. (The pulmo is out this week so we won't find out until next.) I hope he does because goodness knows I'll be going on a google binge looking for information... and we all know google can be a person's worst enemy!
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.
Actual Age
Adjusted Age
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!
Noteworthy Sites
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8 comments:
stay away from google and wikipedia! although we all know that's impossible.
x to you all.
clare.
Clare - I don't do wikipedia. I had a prof tell me that anyone can contribute to it, so it's not reliable at all. Since then, I've avoided it like the plague. :o)
true - it's just written by its readers. for some things it's a good place to start but unless you know something to start with then you never know if what you are reading is just total garbage!
Yeah, stay away from Dr. Google, he tends to assume the worst and scare the crap out of anyone. Good Luck and I hope all goes more in yours and Mac's favor. She is getting so big and cute.
-Tina, Kelsi-n-Karli
I feel your frustrations...we went from cpap and now on a rate but i know that its not forever. I know that one day soon the malacia will correct itself and all the "stuff" will be a old distant memory. Its good you went for the study so you found that out. We go monday to have granulation tissue surgically removed-please keep us in your prayers! You are in ours-thanks for posting about the study!
Hi, I love the photos of your little miss...she is so cute! We know all too well what it's like to feel defeated and not move forward with the trach. It can be so frusterating to not have all the answers. Hang in there!
Hey there are a lot of physiological reasons for central apnea. Abigail is being placed of cpap with back up rate too. I told you our little girls are too much a like. They keeping growing and things might change, don't get too discouraged. There are options for non0invasive ventilation for central apnea is callen ASV. So apnea in some doesn't have to mean life long trach. :)
Cheryl
What disappointing news. Do they know what is causing the central apnea? Autumn's is because her brainstem from her Chiari malformation. They said if it is just immature then she will grow out of it by the age of 4-5 but if her brainstem is bad then she will never grow out of it but we are praying for the first scenerio. The sats Mac is having is Autumn's regular good sats. ;) Does not seem like the apnea is that bad so I would not worry about it too much and I'm sure it's a minor set back that she will outgrow really soon.
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