Friday, February 4, 2011
Dust Bowl Days......
"Theres a new wind blowing" they say
Its going to be a cold cold one
so brace yourself my darlings
it wont bring anything much our way
but more dust bowl days......
Things have gone from bad to worse........
So we were told that with the trach things would be better. That Thurston would be breathing better, that he would be more comfortable that he would be stable and that he would have a guaranteed airway to work with. Nothing could be further from the truth. He is even more unstable than he ever has been. He was supposed to come home yesterday but because of the weather and the threat of rolling power outages, we all decided to wait until Monday. Well now that is not even going to happen. I have to wonder if he will ever get home. Need I remind everyone he was born March 8th..............yes a year is creeping slowly up to us with no end in sight.
This morning he had yet another "episode" and desatted down into the 70s and they had to take him off of the vent and bag him several times and turn up his oxygen to 10 liters(he is supposed to be in the 3 to 4 liter range). They have absolutely no idea what happened to him. Of course they are running the battery of usual tests that I could repeat in my sleep. The only solace is that at least he was in the hospital and if he had come home we would have had to call 911 within the first 8 hours of him getting home besides going through the horror of trying to get my son to breathe.
Thurston is more unstable than ever, he is more uncomfortable than ever, he is less mobile than ever.....and the trach was supposed to be this miracle.......we knew it wouldnt cure him but everyone said how great it would be and how we would be so relieved, how he would be so much happier and more comfortable and that we would be asking ourselves why we didnt do it a long time ago.....Ive never ever seen my son in so much consistent discomfort in his entire life. When is this going to end. When do we get to see the light at the end of the tunnel. When will it be our turn to not just get our son home but to get him to a point where we can have a half way normal existence with him. I have talked to several trach mommies and all of them said that their children thrive once they got the trach. I guess Thurston is just one of those unlucky cases. Why does he always get the short end of the stick? Why does he have to be the one kid that has to suffer endlessly? I am beside myself with grief. This process just seems to be neverending. I feel like I am trapped in a Steinbeck novel you know the long one not the short novella where he describes each and every ant hill in detail, it feels that you are never going to get through the the next chapter let alone the book. Where is FDR when you need him, where is our New Deal. The tumbleweeds just continue to blow down our alley of life, the water just keeps getting sucked dry and all I can envision for our future is more dust bowl days.