The Positives:
The flexible and rigid bronchs went really well. Mackenzie was breathing on her own through the entire procedure(s) and only required a bit of oxygen. Go Mackenzie! Many of you know how terrified I was of this bronch setting Mac back (hah that rhymed) from a respiratory standpoint. She's definitely proven that she means business and is going to keep moving forward.
Her subglottic hemangioma is involuting - yay! Right now it's estimated to take up roughly 70% of her airway. The hemangioma is behaving exactly like we anticipated, so that's terrific. I have a picture that I'll have to scan soon of her airway and what it looks like. I'll also have to dig out the first picture to compare.
The Negatives:
I was hoping this bronch would reveal a magical answer as to why Mackenzie was having apneic episodes. Unfortunately, we didn't get any. I talked with the trach nurse this morning and the thought is now that they are truly central apnea episodes as opposed to being secondary to "something". The current plan is to keep Mac on the CPAP with back up rate until she outgrows the apnea. We were told the mystical age is typically 3 years. The good news is that Mackenzie is recovering on her own from the episodes, but without the breaths to kick in she has extremely nasty desats -- hence the back up rate as opposed to a set rate.
I took the news a little hard. (I'm sure it didn't help that Andy left for CA again this morning.) While Andy and I had planned for several years of Mackenzie being trached, I still had a lot of hope banking on it being a quick, temporary situation. To now know we have at least 2 more years to go, I was a bit disappointed. Another trach mom commented that the reason a child was trached isn't always the reason they stay trached, and that's certainly ringing true for Miss Mackenzie.
BUT! It's all going to work out. It's not the end of the world and while yes, it's disappointing and we all wish things were a little different, I know without a shadow of a doubt we can do this for as long as it takes.
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6 comments:
Hey Niff...just letting you know I'm thinking about you guys.
I am glad you got some positive news and I am sorry about the negative. You guys are always on my mind.
Hello Niff and Andy,
I am glad to hear that Mackenzie was able to breath on her own during her procedures. She is one tough little cookie! I am impressed by your blog on this journey you take with Mackenzie, you are amazing parents. I think you should have your voice heard by over 6 million monthly visitors who come to Wellsphere's website to seek information on a variety of health related topics. We would like to raise the awareness of children's health, and connect you and other people who are in similar situations. Through Wellsphere's HealthBlogger Network, you can engage with others to lend a helping hand for one another.
For more information about joining, please visit http://www.wellsphere.com/health-blogger or email me at hua [at] wellsphere [dot] com.
Hope to hear from you soon!
Hua
Director of Blogger Networks
good to read your update. it's disappointing to think that the trach will be here for a bit, but i have no doubt that you will bounce right back and continue doing just great :)
good to read your update. it's disappointing to think that the trach will be here for a bit, but i have no doubt that you will bounce right back and continue doing just great :)
I know it is disappointing to hear something that you really want to hear although you know in the back of your mind that it comes with only the best of news (does that make sense???). She is a miracle baby needless to say and she will keep proving those doctors wrong!!! I am glad you were able to get into a bigger room, they are so nice when you are packing for 15 ;). I feel like just to go to my parents house, which is less then a mile away we pack to go on a mini vacation (especially now with not only Kaden's things but Brody's diaper bag and all the food he thinks he needs to eat). I am glad you are able to get that sat probe off of her more often, one less thing to worry about all of the time!
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