Tuesday, April 03, 2007
Hi, i just thought i would write a brief update on Bennett.
It has been an emotional rollercoaster to say the least.
Thursday, following his birth, he was intubated and somehow ended up with a hole in his left lung which resulted in a collapsed lung. He was placed on an oscillator, which is a type of ventilator that inflates the lungs and takes many (750 in his case), quick breaths per minute for him. He is still on it, although his pressures have been decreased to the point that he is now able to take some quick breaths on his own.
He was on many meds also, muscles relaxants, morphine for pain, heart and blood pressure meds, to name a few. He has been weaned down and is currently only one for his heart and one for his blood pressure. He does receive a steroid shot throughout the day, but it is given through a line already inserted, so it does not involve any unnecessary pokes.
He is currently having a PICC Line inserted, which is an intravenous line which begins at his left ankle and is threaded up to a large vessel near his heart....ouch....poor wee man. He tries to cry, but cannot make a sound due to the endotracheal tube that is inserted into his lungs through his mouth. He makes such a pained face, and even gets tears....but not a sound comes out. It is so difficult to see him like that.
His oxygen sats have been difficult to manage so he has been on oxygen since coming here to the children's hospital. He was on 100% yesterday morning, but has been weaned down again to about half of that....hopefully that will be able to be decreased soon since some of the medical staff here is not that enthusiastic about giving him much time to prove himself. If they had it their way he would have been taken off of life support the day he was born.....and it was suggested again on Saturday morning...while i sat at his bedside alone.....can you believe how insensitive that was?
Why can't some people see how precious he is to us, and just provide care with compassion? He is still a 'normal' baby to us, despite his trisomy 13 diagnosis...but many still see him, and many others like him.....as 'freaks of nature'....sounds harsh....but that is exactly what i know they are thinking when they look at him.
We think he is beautiful.....and perfect.....right down to his tiniest 6th toe on each foot! They are so adorable.
He is a fighter...now doubt about it......I keep telling him not to give up......cuz we have a job to do here....and that is to change some views about these Trisomy 13 babies....and others that are born with similar genetic conditions.....it is not their fault....or anyone's fault really.....
but they should still be treated with as much care and compassion as any other child would be. Why can't everyone understand that?
I must go now, but will keep everyone updated as i can.....with the information that is given....so confusing....as it changes so much each day.
Bennett will not be receiving any kind of surgery at all until he becomes more stable....as he is still in quite critical condition.
Please everyone keep him in your thoughts and prayers....we need all the help we can get.
Gotta go now.....there is much research I still need to do before I can get back to him.....and then there's that little thing called lunch that i have forgotten about for the last couple of days.....so i guess i should keep up my own strength also, so i can continue to be strong for him.
Lots of luv to all of you......
from Bennett and his folks...xoxo