OMG! It's gone from a relatively slow day to a big day. A huge deal! I spoke with Christian's "doctor" on Friday about getting him a Passey Muir Valve (PMV). This will allow him to vocalize if he chooses. It will also help him strengthen his cough and it's a step to removing the trach (hopefully, one day when he's ready).
Well, the doctor said he would discuss it with the speech therapist so the speech therapist visited today. She was different from the one I'd met before so I thought she was an aid. I had left Christian asleep and I am so so SO adamant about not waking him if he is sleeping because rest is conducive to brain injury recovery. And I'm especially ticked when they wake him for something like changing his diaper or taking vitals. All things that can wait until he wakes up! So I'm constantly running the aids out of the room and I thought she was one so I came up behind her and asked, "Did you wake him up?" in my most impatient way (I mean seriously, they just don't get it. I hung a sign by his bed and everything!). She looked totally blind sided. I felt really bad when she introduced herself as the speech therapist. I was embarrassed, but enough already with the determination to wake my kid up!
Anyway, on to the more important information...she said we'd try the PMV and she'd put in an order for it because he seems like a good candidate! Great! I thought that would take a few days since they have nothing here, ever, it seems. NOPE! He gets it today and as soon as he wakes up we're going to test it out! I'm so excited and so nervous. The PMV allows air in the trach but not out so it forces air up through to his mouth and nose. The speech therapist said he may not tolerate it and that's okay on his first try. If he doesn't quite vibe with it the first time we'll just keep trying. The respiratory therapist was a total advocate for PMV's and was so hyper and excited when he delivered it to the room and he said he really hopes it's on his shift!
So wish us luck and say a little prayer for Christian. As soon as he wakes up...it's go time!
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GOOOOOOO CHRISTIAN!!! you are doing such a GREAT job Shauna of advocating for your little man!!! You just keep pushing!! Christian will continue to prove them ALL wrong!!! I hope to talk to ya soon!
www.makenziesmiracle.blogspot.com
I'm praying for you Christain. Tell your mama she's doing a great job taking care of you.
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Wonderful news! Praying in Texas....
His improvement continues to impress me! With God ALL things are possible. You know that I'll be here in Missouri praying every morning for your little man.
I'm going to have my prayer chain at church praying for him also.
Hugs,
Tracy
That is great news! Prayers that he'll like the PMV.
Good job Christian. So much progress and so quickly. What a trooper. Keep up the good work mama. :)
What does one write after reading all of your posts? I don't even know but feel compelled to.
I had heard about Christian's accident the day it happened. My parents live next door to you and your family.
I now live out of state, but have continued to think about your baby and wondering how he has been. I am so happy to hear (read) how much of a fighter your little man has been and continues TO BE!!!!!!!
I am in awe of not only his strength but YOURS! I will definitely continue to follow his/your journey and continue to keep him (you and your family) in my prayers!!!!
I also can't help but add how incredibly moved I am right now by your words and because of your words I am reminded that my babies are a true blessing from God and no matter how crazy things may get because of them I will cherish them and not take them for granted. Thank you for that.
God bless you and that beautiful STRONG baby boy of yours! (((hugs)))((((hugs))))) and more (((((hugs))))
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