Kimmy Cash continues
October 24
Since I wrote last I've discovered some info and come to some conclusions that I should share because the buzz in our community proves there are far too many people that can't be left in the dark.
One, getting the "expert opinion" and/or specialist second opinion might be virtually impossible due to a couple of factors:
1) her condition - it's becoming all to clear to me that transferring her at this moment could in and of itself be fatal. At the very least it would significantly alter her mortality rate. (based on a combination of my research into ICU transfers, mortality indicators and opinion from our Dean family) I'm still discussing this with my mom and dad trying to get everyone on the same page. Balancing or trying to balance the emotional state of everyone is VERY difficult for me right now but I am making concrete steps --- Could you make that decision? Would you transfer your loved one at this point? My thought process was that the risk of leaving her there and not taking this huge leap... Well, you know what I mean.
2) The apprehension from individual Dr's around the Nation has a common link: malpractice. Seems noone wants to touch her or give opinion because of the type of conditions --hospital acquired maybe and work already performed on her by Methodist. It's very difficult getting a hospital to agree to take her or getting a specialist to come in - Now were talking about money also. See, it's their job and hospital profit that could be screwed..it's MY sister's human life ya know? Ok...let me continue before I get too pissed..
Two, I've put together a pattern . Since the day she went in the care has gone like this:
Unknown condition "A" causes "B" and "C".
"B" is worked on , treated or concentrated on, "A" is disregarded and "C" takes the backseat.
C (on the back burner) and B's side effects together create "D" and "E". Seems we forgot about "A", the underlying-
Now D and E belong to an even bigger problem and remember A?
I'm confusing myself.. Ok, bottom line? She is being treated after the fact, it's just a catch up routine and prevention does not seem to be part of the protocol, IMO. . Repair what goes wrong with no advance thought as to what can (and does everytime) happen next and deal with the underlying issues later, after they become severe. Proven over and over again... Since day one my parents have relayed the symptoms, I've researched the hell out of it, came up with 3 or 4 things that are undeniable (IM uneducated O) and sure enough all of those things become fact with time.
The question is :
**** Is this a communication problem? god complex (I know everything, I can manage so I disregard etc) or problems relaying the findings or getting someone to act on them?
or
****Is her critical care team incomplete (or incompetent)?
My opinion is that there is no prevention going on here. For whatever reason the hospital team is incomplete. Individually are they totally ALL incompetent? I would say NO based on the current surgeon's actions and the Infectious Dr's guess at her fungus. Too many cooks backing in and out of the kitchen perhaps? Dr's have been backing in and out of her case since day one when I arrived. The hospital switches patients at the beginning of the month this I know for what we have been told is a teaching process. (great) When the immediate emergency is blood-related for example, the OBGYN backs out. When it's surgery, the infectious backs out. Example? When they assumed prematurely that the Sepsis was cleared they sent her to a regular floor and the Blood Doctor said he was "backing out and removing himself from the case" now. Huge mistake . Number one a Xygris patient is supposed to be monitored for 30 days after according to the drug makers site. Two, clotting (the underlying DIC!? ) is a side effect. Remember now according to her surgeon clotting is what caused the rotting of her entire stomach, spleen. preforations in intestines, coding etc etc. She should NOT have been sent to that floor and she should have been closely monitored by none other than..the blood team. DUH!. This would have saved her organs and there would not now fungus/bacteria issues. Fact? She wouldn't be where she is had it not been for the ischemia/total gastrectomy complications.
Check this out: Dad arrives last night and calls to give me an update. Says Chirsty looks surprisingly good- the only thing he noticed off hand was that her eyes were yellowish and when he went back to work last week they were bright white.
Ok, so I remember that when researching the disseminated intravascular coagulation I came across this somewhere. So I stayed up all night and after alot of digging I found that this yellowing occurs when there is excessive bilirubin (def: waste that comes from the breakdown of the hemoglobin from worn out red blood cells) in NEW blood and the liver can't keep up. Going even further brought me to a disease called hyperbilirubenemia and Hemolysis. There is ALOT to this info and it's not as simple as I'm writing but the bottom line? I give all of this info to my Dad before the 8 am Dr arrivals so he's armed..he calmly asks and immediately they order tests on a bilirubim count which had not been done for some time!!! See? The count had NOT BEEN DONE! We get these results back today. Also discovered that the TPN (tube feeding) itself causes the liver to slow down making it unable to process the collection of bilirubin. Now, without a spleen (removed during gastrectomy), the TPN (tube feeding) and no day to day watch of her bilirubin count--- well, another HUGE problem (severely life threatening) can come into play.
So my conclusion is that the DIY ethic (do-it-yourself) I (we all) cling to--- well, it HAS to apply to every single aspect in life. 15 years ago it was only about making my own clothes so I didn't have to buy them. Producing our own CD's because labels sucked. Writing our own zines etc etc. In the past 2 years D.I.Y. it turned into mass political action because our communities and people were suffering and from our campaign of course, expecting others to fix it was ignorant . Now, my god..now today, its something else entirely. Never in my life would I have thought that you couldn't even rely on trained, educated medical professionals in an emergency situation. It's true. Of course Dr's aren't a "god" and of course there are freak things that supposedly just happen. Of course you should be aware of your own body and seek knowledge etc etc. ( I thought us girls were only supposed to keep track of our periods, JESUS!) But.. for me.. I don't know. I never imagined that you couldn't count on emergency medical care in this country at least just a TEENY, TINY bit. Questioning what is going on has taken too much of our time. I'm thinking that with persistence and a clear mind I (we) can beat them to the punch and I think I (we) can get one step ahead of it. It sounds like a lofty or mighty goal I'm sure but I'm convinced you guys. We just HAVE to research it ourselves, get one step ahead of these Dr's and save her. That's it. That's all I can do at this point. That's what has to be done.
I'm still very much seeking opinion and gathering it all. I'm getting ALOT of it so it takes time to weed through but I'll do it quickly. Still, every single piece of information is welcome. Even if you think its the oddest thing or may be irrelevant..keep it coming!
Oh yeah and FINALLY, it's high time to hire a lawyer. (thanks guys) ( I suppose after that we'll have to do D.I.Y legal work too representing ourselves in the end anyway!)
(shit..one more side note (sorry): important info came from a blogger that contacted an old work partner who knew someone through an old friend (whew) Well that old friend was already aware of Christy's situation via her own daily lurking on our Dean blog--amazing.!! There are several instances of this.. Thank you Renee, thank you guys!! )