Tuesday, February 15, 2011
One HUGE Step....
One HUGE step and one daring move.... As my previous post states... Devin is suffering from pneumonia AGAIN!!! Yesterday I spent a great deal of time talking to my local team of doctors who in turn felt it was time for both teams to talk and come up with a plan.. Music to my ears!!!
Although a lot of what's going on doesn't make sense, which Derrick and I completely agree with. Their has to be a reason he keeps getting pneumonia!! He has ALL the symptoms of someone who has reflux even though he is on a ton of medication for it.
After discussing all the pro's and con's of different things that can be done, tests that could be run, & surgery... they decided the first step was.... TO STOP ALL TUBING FEEDINGS AND LET DEVIN TRY TO DO IT ALL ON HIS OWN... At first their was a rush!! of excitement... OMG we are FINALLY free of IV and feeding tube nutrition... This is the day that we have been waited for!!!! The day that has been unachievable!! and here it is... just dropped into my lap!! No preparation.. JUST DO IT!!! Then the nurse in me kicked in... "are they CRAZY" Devin gets 1800cc (60oz) of 18 calorie formula every day!!!! he will never be able to do this..
Today, I wanna believe he will fly !!! but deep down inside I truly don't believe it will last!!! If it doesn't then we will back pedal a little... but I will cross that bridge when we get to it!!!!
Although a lot of what's going on doesn't make sense, which Derrick and I completely agree with. Their has to be a reason he keeps getting pneumonia!! He has ALL the symptoms of someone who has reflux even though he is on a ton of medication for it.
After discussing all the pro's and con's of different things that can be done, tests that could be run, & surgery... they decided the first step was.... TO STOP ALL TUBING FEEDINGS AND LET DEVIN TRY TO DO IT ALL ON HIS OWN... At first their was a rush!! of excitement... OMG we are FINALLY free of IV and feeding tube nutrition... This is the day that we have been waited for!!!! The day that has been unachievable!! and here it is... just dropped into my lap!! No preparation.. JUST DO IT!!! Then the nurse in me kicked in... "are they CRAZY" Devin gets 1800cc (60oz) of 18 calorie formula every day!!!! he will never be able to do this..
Today, I wanna believe he will fly !!! but deep down inside I truly don't believe it will last!!! If it doesn't then we will back pedal a little... but I will cross that bridge when we get to it!!!!
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2 comments:
Be positive Colleen and hopefully everything will work out. Hang in there. Thinking of you guys!
I wanted to let you know that I always keep up with Devin's story. It amazes me everytime I think about all of you. Hope Devin gets better real soon so he can enjoy the nice weather. BASEBALL season is here! Whoo hoo!
Edana
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