Today has NOT been a good day. Tonight has been just awful. If we weren't seeing the Specialist tomorrow, I'd run him in to the hospital right this very minute. And who knows.... it might just end up happening before dawn breaks!
Tonight he's just drained again, completely. He also is experiencing lots of sharp pains in the abdomen, which tells me he's having a Crohns flare-up. If Doctor Depew does not have him admitted by the end of tomorrow, I am suspecting that I will be making a trip to the ER with him myself before the week is out.
Blake and I have talked and we have decided that we are going to tell Dr. Depew that we are not subjecting Blake to any more Methotrexate. I have a suspicion that he will take one look at Blake and realize this; but just in case we get one of the other doctors in that office, I will be making it quite clear that we need to be doing something else. I really feel confident that they are going to move us in another direction, to which I will be sooo grateful.
I feel like we've just back-peddled the last few months. He was doing SOOO wonderfully in January and early February. And then we had to start jumping through the government hoops. Grrrr.
Anyways, no sense in chawing about this anymore. Tomorrow will tell us more. In the meantime, Blake has finally settled down in the last few minutes. The pain has been bad tonight. I am typing here in bed beside him, trying not to click too loudly. It is to the point where he can't be left alone, nor does he want to be. Even to leave the room sometimes, he will say, "Don't go yet. Just stay here." I do believe he's scared. And he has every right to be. This really stinks.
I'd LOVE to call our government and speak to the guy in the Giovanni suit who sits behind the big oak desk with Blake's file in front of him. He opens Blake's file and simply stamps it with the "try-other-meds-first" stamp. (Reminds me of when Morgan Freeman is trying to get released on Parole in the moving "Shawshank Redemption". The parole board doesn't care what he has to say or if he has "changed" since being in prison, they just keep stamping DENIED on his parole request. They just do what they wanna do!)
I'd love to meet this government-Giovanni-suit guy and have him see my son as he suffers, just so the government can "save" a few bucks. Well, they haven't saved anything because all the money they COULD have put in for a treatment of Remicade has been spent on Blake being hospitalized again and again. They think they're saving money, but they're not. And at WHOSE expense? Blake's!!!!
Anyways, I'm just ranting a bit and I shouldn't be. I'm tired and need to get some sleep. I am frustrated tonight for the first time in a long time. And I'm overtired. So that's not helping.
Pardon my venting.
I'm done now.
Promise.
I will update tomorrow once we return from Kingston. Please remember to pray for Blake. Tomorrow will be an exhausting day for him. And since he can't walk ten feet, he'll be meeting the doctor in my Dad's wheelchair! That will help them to see the seriousness of what's been going on here lately.
Thanks for letting me explode a bit.
Until tomorrow...... I bid you adieu... to yeu... and yeu... and yeu.
Actually, before I sign off, I'll share a few photos. Maybe Blake and I will show up at the hospital like this:
Doctor Crohn and Doctor Ulcerated Colitis - October 2009
Maybe THEN they'll take me seriously...... :o) Oh folks, I gotta keep the humour in this or I'll go crazy!
Or maybe we'll go to the government offices looking like this! I wonder if Giovanni designs white lab coats??????
hhahaha.....
G'night, everyone.
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