Wednesday, June 9, 2010

Blake's Health Update 2010/06/09

Can I hear a Hallelujah!

Or an O Joy! O Bliss!

Or a Thank You, Lord!

Or how about just a big ol' honkin'

This afternoon Blake and I met with Blake's Specialist, Dr. Depew. After some questions to Blake about his health, weight, nausea, appetite, bowel movements, stomach pain, etc., he basically said, and I am paraphrasing, that this Methotrexate isn't cuttin' the mustard and that he wants Blake admitted to hospital to start once again receiving Remicade!!!

I looked at the Doctor and said, "I could just JUMP across this room right now and HUG you!!!!"

I was thrilled.

And we won't be taking a long time between the first few doses either. He wants Blake to start up again just like last time, where he receives Dose #1, then in two weeks has Dose #2, then in four or six weeks has Dose #3, then continues with regular doses every eight weeks thereafter. And the government should be responsible for paying for it! The government wanted us to try other meds first; and so we jumped through hoops and did our little circus routine for them, and our circus show is now technically over and therefore they should approve Blake for Remicade. I am praying that it is as easy as that!

But one thing I DO for sure know, we are on the calling list and should be receiving a call within 48 hours to get Blake's little tiny underweight hiney to Kingston General for a big ol' dose of Remicade. I'm thrilled beyond words, yet I seem to keep typing, so perhaps that was the wrong phrase to use! haha

He still feels on the "yucky" side today, still feeling weak, and still getting some moments of pain flare-ups in the gut. But at least we know what's coming shortly.

Blake said to me last night, while in severe abdomenal pain, "Mom, I just can't even remember the last time I felt good." I said, "Just hang in there Blake. A few more hours and we'll see the Specialist and everything is gonna work out. We'll get you back on track again soon." And voila! We are back on track. I love our Specialist. He knows what Blake needs. And he's gonna get it for him.

I feel terrible for these doctors. They want to help their patients, yet the government is controlling who gets what help when they [the gov't] says so. Grrr. The doctors hands are tied in so many cases. But in this case, we did the circus routine and NOW it's time for the closing act! Hey folks, it ain't over until the fat lady sings. OK, I know.... that's for opera, not for the circus, but you get the idea.

Today Blake's weight was down to about 117 lbs. NOT very good. If you'll recall, last October he was down to his lowest at 102 lbs. Dr. Depew did some calculations today to figure out Blake's BMI (body mass index). It is a measurement calculated by using your height and weight. You generally do not want to fall below the number 20, and Blake is currently at 17. That's not good. Apparently in October 2009 his number was at 16. So as you can see, he is very below where he should be. Because of this, Dr. Depew feels the need to put him back on Remicade and work to get that weight back on.

Basically I think it boils down to the fact that when the intestines are messed up, they cannot keep the proper nutrients in the body. The nutrients just pass on through Blake's plumbing system, so he is not retaining any of the good that he takes in. From what I understand, if we get the intestines healed up, they can better work to keep those nutrients where they're supposed to be.... in Blake's body!

So, now we wait for the phone call. I keep hearing the Jeopardy game show song in my head....... the clock is ticking!

Now I really must get to bed. I have lots to do tomorrow to get organized in case we do get the call. But first I want to thank all of you for praying for Blake.

And thank You, Lord, for answering our prayers. You hem Blake in --- behind and before; you have laid your hand upon him. Such knowledge is too wonderful for [us], too lofty for [us] to attain. (Ps.139:5)

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