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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.



  2. I am so sorry to hear about Thurston :(. Even though I don't post much on Inspire, I always look for your updates. Your Thurston and my little girl have a lot in common. I just read your latest update to my husband and we can both relate to what you are saying -- our little girl didn't benefit from the trach at all and is not a happy girl she used to be when she was intubated. We thought that the trach would help her develop, instead she's not able to do many of the things she used to do, such as tummy time, for example.

    This sucks and is just so unfair! Why do our children have to suffer like this? I don't know if we'll ever be able to take our little girl home and she's almost 8 months old!

    Thinking of Thurston and your family!

  3. Shit, it isnt fair. Period. Not at all. I am sorry the trach has not helped him. I know, and i hope you know, that you are doing everything you can for him. Sending my love to all of you.

  4. I am just sending my love,prayers and hope that things will turn around for Thurston and he will surprise us all. He has been through so much like all of our little ones and it does seem never ending but know that even when things look their darkest light is on the way.Just continue to hold on and keep your head up. We all love and are here for you, Thurston and your husband and daughter. Sincerely, Shonda

  5. I know how you feel....being in the hospital for nearly a year sucks! Cameron is creeping up on a year here too. And I don't remember when Thurston got his trach but I know that it was probably a good month or five weeks before Cameron turned around after having his trach put in. I remember at first thinking, "what the heck have we just done to our little man? He is worse off now than ever before and all we have done is just add more equpment to the mix!" But things are finally starting to improve ever so slowly. Hopefully that will be the case for Thurston too. Hang in there...I know that is easier said than done, but just know I know exactly how you feel!