Once Bitten Twice Shy�
Lyrics from a great rock and roll song, and words to live by for Terri and me. Matthew had his endotracheal tube removed from his throat today and was successfully switched to the BiPAP mask. This picture speaks a thousand words. No one could be comfortable with this device on their face and Matthew is no exception. He is miserable. The mask is like the parasite from the movie Alien. It is strapped to his face and forces air into his nasal passage. He hasn�t opened his eyes since they put it on him. I thought it was from fear but in actuality it�s from the overpressure blowing out of the mask into his eyes. They are going to put some gooey drops in his eyes to keep them from drying out. When he is awake he cries (no sound yet). When he sleeps it is only because they sedated him. As miserable of a picture as I have painted, this is still better than the breathing tube. He is working harder, getting stronger, doesn�t need suctioning, and is avoiding the trach. I say once bitten twice shy because Matthew could crash at any moment. We have been bitten with bad news too many times to throw caution to the wind now.
3 comments:
There is no way to express how we all must feel to see our little brave soldier having to endure this. My only hope is that his lungs will get stronger each day and that this mask can come off. I want to see that beautiful face and a big smile.
Love, Grandma Sue
My Dearest Matthew:
I keep telling you to be a Brave Little Soldier and then what do I do -- at the sight of the mask they put on you, I caved in. I called it the "flu bug" but in reality it was heartache for what you are having to endure. Then I saw the pictures of you with a big smile on your face and in your eyes. So I had a good talk with myself and have taken my "be strong" pills and I'm back in the battle with you. We will win.
I love you so much. Grandma Sue
As one of Matthews nurses I consider myself privlidged to care for such a trooper. My little bugger boo gets stronger every day! And yes, his road is full of ups and downs, with achievements and dissapointments yet he has more courage and strength than most adults. That is with the exception of Mike and Terry. They are his rock...his comfort and his whole life. We give Matthew care, compassion and the best of ourselves that we can. But his parents are what make him who he is. To watch mike read to him about the lazy firemen, or 1000 ways to become a millionaire just warms your heart. To know Terry is pumping her breasts for the day Matt can have her milk, meanwhile donating gallons of milk to the breast milk bank to feed other needy children is just incredible. Yes...Terry is the lactating queen ! Moo Terry !!!! All for the love of the little bugger boo. I will continue to watch him grow and care for him when I can so someday he will be home with you guys helping daddy catch the bad guys....Always Keniki
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