Damn... Damn... Damn...

and DAMN!!!!

I'd put a few other choice words on here to describe how I feel, but this is a family blog!

A day in hell has to be better than this. Seriously... it just has to be! To come this far and be told to wait outside is not what we were wanting to be told.

Why do we have to wait outside? Because it seems that Emmah's kidneys and liver are kicking out some readings that aren't good and as a consequence we have to get them back in line before we begin.

The aggravation, frustration and disappointment stem from a couple of things and I don't know exactly if one trumps the other.

So we're very disappointed that we've worked so hard acquiring and securing a spot for this trial and to be this close to stepping through the door then being told to wait on the outside is excruciatingly difficult... I can't even begin to tell you.

I've reached the tipping point...

First, we were supposed to be here on Friday, but there wasn't a bed available... so not really a big deal especially since Emmah's platelets weren't at 100. Then we found out that she was going to be needing a BMA. For that she was to be NPO after midnight on Sunday as the BMA was supposed to be yesterday. Upon arriving, we were told that it was too late in the day. It would have been nice that that had been communicated so that Emmah could have some water or something if she was so inclined. Instead she had to wait over 12 hours to be told that the BMA wasn't going to be happening.

Then she was NPO last night and this morning we were told that the BMA was going to be @ 2pm. Are you kidding me? It's crazy what they expect these kids to endure on top of everything else. So I sort of implored our nurse to see if that could be moved up. He said he would see what he could do. Then the doctor came in and told us the good news... that Emmah didn't have to be NPO anymore... the reason was not something so good.

The frustration and aggravation stem from the fact that University of Chicago and in my honest opinion, specifically Dr. Cohn, dropped the ball on this one. Since these trials are rigid on the standards and qualifications, it would... or should... stand to reason that you would want to be tracking all that you could as closely as you could. Liver and kidney function is tracked through certain levels of certain things in the blood. Also a large unknown was if Emmah's platelets would make the mark of 100. So I thought it safe to assume (and that assumption is potentially the crux of the problem) that they (they being the doctors and/or doctor in charge) would be tracking these things on their own. I mean after all, I'm not a doctor... I just play one in real life... and I'm only flying around with a high school edcutation. <--- that was intentional...

Imagine our shock and surprise and immense dismay when the doctor came and told us the reason that Emmah no longer needed to be NPO. Her bilirubin level was too high... (liver function) and her creatinine was too high (kidney function). She then tells us that the last test they see from the transfer papers is from the 29th... the first day we were there... and that came from the ER... the levels were normal then... function was fine. They didn't have any other test from the TWO WEEKS we were there. Additionally, if i didn't specifically ask for them to draw labs (so as to keep track of her platelets) I don't know if they would have done any! Furthermore her hemoglobin was 6.8 one time and at what point would they have checked that?!?! She got two bags of blood that day.

So at what point did I earn my medical degree?

I mean at some level, you go to a doctor because they posses a vast understanding of something we mere mortals don't. I mean they pay for it (literally) and time invested. They are the experts... not me or Julie. I mentioned to our doc here that each and every CBC they have from the transfer were requested by me... not the doc over there. Again, I go back to given the guidelines, why wouldn't you want to track things pretty closely?

There is a part of me that is seething over what I perceive to be a colossal F*%K UP!

If there were chem panels ordered, we might have been able to see this coming and potentially have done something about it... as it is now, we're sitting here with our things in the wind waiting and hoping that we can get a grip around (and remedy) the kidney issue.

To make matters worse, our poor roomie is keeping us up at night... uggggh! I mean I feel sorry for her... she's here alone, she's 17 I think. She's moaning and twitching in her bed. She's crying out "ow"... she keeps taking her pulse oximeter off thus causing her machine to beep. Dropping things on the floor... and I mean things that make noise. Then she turned the TV on at 3am. Then there's the vomiting. I'm not entirely sure what she's in for, but it's killing me.... especially since she appears so uncomfortable and she's here alone.

These are the perils of sharing a room, but I don't know that I want to go back to Comer's right now... so we will be staying here in hopes that the revamped pain regimen will help alleviate her pain and potentially alleviate her kidney woes.

DAMN... DAMN... and DAMN!!! I was hoping that the 100th Emmah's Quest posting would be a better one... more uplifting.

KEIYTAP