CHarris...update!

[Jbandmmomma]

I say yes to other boards. I would want someone to reach out to me if ever in her position.

 

[SHales]

We don't know where to send them and Charris won't know them from Adam unless we can get a message to her. I agree with asking for help from other DSers in the Phoenix area, I just don't know what to tell them.

 

[Jbandmmomma]

I think we tried to connect her with someone before and couldn't find anyone close enough to make a contact happen.

I know of at least 1 big-hearted Arizona DSer on another board.

 

[Jbandmmomma]

gotcha. ugh. this is heartbreaking to see.

 

[Barb1]

@Spiky Bugger
Have I told you how much all the vets here mean to me! You are all wonderful! I swear if I had last names and permision I would put you @DianaCox and @Elizabeth N. on all my hippa forms. There are some others I feel this way about but don't know as well. I swear i don't know how some of the people have the time to devote to all the different WLS communities and have any personal life at all.
I feel so sorry for @Charris for all she is going through. I am also very scared for her. Now that you said this about the SNF I believe Dr. K couldn't do much either. My mother lived with us the last five years of her life and the last 3 weeks where in a SNF. Once she was in there her regular PCP was out of the picture. Most all SNF's suck
It is so generous for offering to pay for a airline ticket for a vet to go be with her. I only wish I had more that a few dollars to donate to a fund for her.
Thank you for keeping us as updated as you can!
Barb

 

[Spiky Bugger]

Okay everybody...here's what we do...let's pretend that CHarris' facility's Charge Nurse decides to come here and read.

PLEASE write here what you think it is important for them to ask her and why.

Thanks,

Sue

From me...we do not absorb stuff normally. Nutrients and medications go in one end and out the other. PLEASE learn what to do to work around that!

Now...the rest of you.

@SHales
@Barb1
@Jbandmmomma

 

[Spiky Bugger]

We don't know where to send them and Charris won't know them from Adam unless we can get a message to her. I agree with asking for help from other DSers in the Phoenix area, I just don't know what to tell them.

And her voice mail mailbox is full and no answer this morning.

 

[southernlady]

From me:
High quality protein is important...not the Boost or Ensure shit.

GET her doctor to involve her DS surgeon.

 

[SHales]

From me:
High quality protein is important...not the Boost or Ensure shit.

GET her doctor to involve her DS surgeon.

MOST important, to involve her surgeon in her care!!!!
Make sure they have run a full set of labs.
Make sure Charris signs something so that the support person/advocate can get answers from medical personnel and copies of labs/xrays, etc. Not to decide care but so that the advocate knows what is going on or not going on. What is that called?

 

[JackieOnLine]

High quality protein is important...not the Boost or Ensure shit.

like what, for a feeding tube? is there a good option?

 

[KathyF]

Something like an "Advanced Health Care Directive"? That is a a "legal document in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves because of illness or incapacity". Which may be more power for the advocate than you are suggesting.

ETA: Wait a minute, I was thinking of a "Health Care Proxy". This is "an instrument (or document) that allows a patient to appoint an agent to make health care decisions in the event that the primary individual is incapable of executing such decisions."

 

[DianaCox]

I would say to contact Dr. Ara Keshishian at dssurgery.com ASAP, because her treating physicians at the SNF need to understand her malabsorption, including of medications and time release meds, need for extra protein, vitamin and mineral needs, etc.

 

[Spiky Bugger]

like what, for a feeding tube? is there a good option?

In addition to whatever she can safely eat off their menu.

In my case, I could eat eggs, meat products without fillers, and cheese. Nothing with gravy. Nothing with breading. Nothing pasta-based. No big ol' salad, no sandwiches.

 

[Spiky Bugger]

Bump

 

[Munchkin]

There is something very unusual going on here. Everything is not always related to the DS but almost every medical professional is going to ASSUME DS because it's something that charris has that everyone else doesn't have. It's logical. We know she just had a full neuro workup. Here's what I would do for starters:
1) electrolytes
2) blood panel
3) liver enzymes
4) urinalysis
5) cultures
6) gut MRI or CT with contrast(looking for indications of an old inactive leak/systemic infection)
7) CSF
8) PTT/clotting factors

Don't just rely on the machines. Have a real human LOOK at this stuff.

Next let me go off the wall here. I saw a lot of the unusual when I worked at MDA and Baylor. And her symptoms really BUG me. Plus even with all the time we have spent with charris we don't know her IRL. We don't actually know her circumstances or living conditions. Other than the fact she lives in Phoenix. Get a better history. I want to know if she interacts a lot with animals, farm or otherwise. Any history of bug/spider bites in the recent past. And do a gross inspection of her whole body. She displayed symptomology(petechial rash that LOOKED like liver problems from here) before and maybe there is something else now. Eliminate encephalitis, meningitis. I might go so far as to test for environmental poisoning like heavy metals. Who knows, she could be drinking her protein shakes out of a pewter cup. And all of the above can cause neuro symptoms. And did anyone run a syphilis test?