Re: Re: Noah's night last night

January 28, 2007

All of these medical " complication " are nothing but frustrating. Just remember

that tomorrow is another day and hopefully it will be a better day. I just

wanted to clarify that Dr. S. is with the GI team, not the liver team.

As always, let me konw if you need anything when you are in Pgh.

LINDA

-------------- Original message ----------------------

>

> We have not seen the liver dept. psychiatrist, but I would have

> thought they would recommend that.

We did not end up taking Noah to the ER. Amy, his coordinator called

me back and said that he needed to be seen during an acute phase.

They don't believe it is liver related though. I think that is

hogwash. I think we just keep drawing the bloodwork too far after the

symptoms stop.

I think the suggestion to keep him home during these times might not

be a bad one. I don't know why we did wake him up to be honest. I

did keep him home on Friday...but of course he was a mess because he

had 3 tests...and felt anxious to be missing them. I think

homeschooling or something is in his future.

We have not seen the liver dept. psychiatrist, but I would have

thought they would recommend that. I may ask Amy this week if we

talk. We go out Tuesday for the Pulmonary stuff, so...I don't

know...I feel like his treatment is spinning out of control. I LOVE

CHP! I just think we are seeing them follow a book more than NOAH.

They believe that he " should " have 7-10 years from dx to tx. Well

that is all well and good...but what about the fact that he has

fibrosis and in some areas near bridging fibrosis on his bx? I don't

know...I just am totally at a loss for where we are in all of this. I

want him better! Within 3 months time his liver went from 2

fingerbreadths below coastal margin to unable to feel...and as Keljo

slipped and said he was worried it was " shriveled " ...but no one will

image it. Slivka's recommendation was for yearly imaging...even if by

ultrasound...and I can't get that. Frustrations abound!

But they did say they won't even have that conversation until we

figure out what is going on with all the brainless stuff and the shaking.

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