Wednesday night is going to be tough.  We have chosen Wednesday night as the night that we begin letting John sleep without his Ventilator – overnight.  He was successful with his wean from the vent during naps.  It has been about four weeks now and doing great! 


Here is where I am feeling so anxious.


John – who has never slept more then 3 hours without his ventilator needs to attempt to sleep about 10 hours without his vent.  I have no clue what to expect.  I have no overnight nursing so I will be staying up till 3am while my husband will wake up at 3am and stay up till 7am when I will then get up for the day.  (sounds so familiar – the good ole days!)


I am afraid he will hurt and I won’t know it.

I am scared he won’t be able to do it – but deep down I know he will someday.

I am anxious to see how he does.

I am emotional because when he DOES do it – we will have a whole new life ahead of us.


And then there is John – just being John – big bad John so happy happy happy! I love that little man!




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Jun. 2, 2008 at 3:58 PM GO JOHN!!! 

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Jun. 2, 2008 at 4:00 PM

BREATH BABY JON!!!! there is some cheerleading from pa for ya!!!!  i'll pray for you and your family...i hope that jon does ok and sleeps all the way through the night. 

 BTW....we ALMOST got the same shirt for jack that jon is wearing in the top pic....jack always have to have a snack in BOTH often we end up splitting the cookie in half!


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Jun. 2, 2008 at 4:52 PM

Go Johnny go!!   

Barbi,you know Johnny better than anyone in this whole world,if he is hurting you will know!

If he is unable to do it this time,thats ok. Remember we go on our kids time.

I will be thinking about you!   XOXO   Tina

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Jun. 2, 2008 at 4:53 PM Breath baby boy!! We're cheering you on in SC!! :) Much love!

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Jun. 2, 2008 at 5:49 PM breathe baby jon good luck

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Jun. 2, 2008 at 6:00 PM

John, I know you can do this.  You are so big and strong and you WANT it.  That is the biggest thing is that you WANT it.    And don't worry Momma, you will definatly know. 

One question, why don't you get overnight nursing?  Do you get daily nursing?  Do you work?  Jack Jack is allowed 17 hours on the days that I work and 10 hours on the days that I dont.  I was just curious.

I cannot say that I know how you feel because Jack Jack has never been a vent kid, but the trach, I do feel you on.  I know it will be very scary for you.  I remember the first time I put his Passy Muir on making it so that he had to exhale through his mouth.  I put him on a pulse ox to be sure he was breathing.  I was freaking out about every little snort.

Just be patient and if he can only make it half the night, then know that is longer than he has done in the past and maybe he just needs to work up to it.  But he is a brave strong little man and I know he will be there someday.  Hopefully he CAN do it in one night, but just try not to get down in the dumps if he doesn't.

I will say a giant prayer for him on Wednesday night and please update us when you can on Thursday morning.  I will be jumping up and down for him.


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Jun. 2, 2008 at 8:14 PM

Oh sweetie, your such a great mom and may god bless you and your family...

I am soooo excited for him, what a beatiful little man he is.

I can only tell you that he is happy, happy, happy because of YOU !!!!*TEAR*

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Jun. 4, 2008 at 9:57 AM Sending you peace and strength and of course LOVE.  He'll be FINE.  :-)

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