Oh my god, you poor thing. I think everybody is in cahoots with the other people. Kind of hard to trust when that happens to you, right???

I really feel for you and hope that you have more and more pain free days.

Keep posting and I'll make you smile.

Thanks much

Melody

good days, bad days
 

Mel

It was 20 years ago, and I have come a long way. So have the two of my kids who were in the back seat that day. Their stories are truly inspirational and courageous. I won't have more and more pain free days, on the contrary, unless some cause and cure is discovered....well, I am like a lot of you...coping with daily pain and wishing it would stop. With autonomic and sensory neuropathy, on top of the other stuff, eh, I am lucky I am as old and as active as I am. Stubborness...I guess, that is it..just plain stubborness.

I am not poor, but rather, richer for the experience, as hard as it was. My daughter who also survived the accident says the same thing about herself. I am not cynical, but just wiser. I trust people, I just learn a ton about who is doing what, and what they are doing to whom....LOL. I do not trust some one anymore, until I have a reason to trust them. Trust needs to be earned. It is too precious to give to just anyone, as trust is the foundation of love.

I have ended up a chronic researcher, with hyperactive reflexes , yet with a bit of laid back dry wit. Hey, what else could go wrong, right?

I actually feel a bit sorry for the doctor who did that...he had to live with knowing what he did...that has to bother a good soul.

Every day, since that day, 20 years ago, not one day has come and gone, when I haven't remembered that I could have vanished from earth that day...not that every day is easy....nor that at times I don't wish I had vanished that day.

I have in my life, cared for thousands of patients, worked with hundreds of doctors, and I think, that most people do the honorable thing, most of the time....at times, people fail. I fail. It doesn't mean I don't keep learning. (Now, some people are just jerks, and they have some part of their conscience, spirit or brain missing-they are poor, and I don't mean financially.)

At times, I needed a good kick in the butt, more than a shoulder to cry on...good thing I have had a lot of butt kickers in my life.;) At times I need a shoulder to cry on, and if I do, I can usually find one...for at least a few minutes...then they are onto some dryer endeavor.:D I have the option of solitary wallowing (which I do at times, or getting my most curious self into some stimulating activity---like getting chased by dogs...(once one actually pulled his dog house with him for over a mile...he was darn fast too.)

I think, curiosity and resilience are the two most important qualities to living a full life, no matter how long it is, or how difficult it is. I see a lot of it on this forum.

Thanks for the empathy. I appreciate, that you appreciate, it was a tough go for me for a while...still is...and I think the one great thing about this forum...is that the contributing members, understand the concept of empathy. And you guys all know, empathy is not sympathy, and that is what makes you a pleasure to 'talk' to!:) and a resource to learn from, in many, many ways.:hug:

Mel,
You can solve this problem. Demand Alan be given via pump only. Tell the neuro about the time changes, problems etc. Trust me they will even try to run it quicker at some point. This way the amount Alan is having infused is just figured out via pump for four hours. Trust me neuro's know this scene is going on with I.V.I.g. Whatever that rate is safe for Alan per hour is what it is via pump and don't let the nurse tell you anything else. Your neuro is responsible as the ordering physician. If it can not be done correctly and it really is very simple, that is why I cannot figure out why these nurses cannot properly follow one simple order. If they cannot do the job right, even though they may tell you insurance companies do not like to pay, then tell her it will have to be done in out-patient hospital setting. I went through different nurses, agencies and found the same pattern. Side effects do happen with increasing infusion rates. Not saying it will but why risk it. It is not worth it and some can be serious. I wish you well.

Mel
 

Cycelops got me thinking Bob and i where in a head on Collision
in 96. A underinsured driver was asleep at 2 in the afternoon,his
wife was asleep and so was his 2 week old baby.They hit us they said
we went around 3 times and ending up in a ditch. The man who hit
us hit a cement truck before his car stopped. He walked to the ambulance
so did his wife and thank God the baby was ok. They hand to break
open the door got me out,broken hand,and broken leg. Poor Bob had to be
cut out.

They had to fly him to where i live he was in icu for 6 months and rehab for
4 months. Not to mention nurses and rebad man at the house. It was
a nightmare. Some Drs. said is there going to be a lawsuit,i just hate
all that,i would like to avoid this,i just handed them our lawyers Tele no.

But so many things are over looked and so much does show up down the
road. The man who hit us later told the reporters at the newpaper 6
years later about how him and his wife where drug addicts for years
but got religion. And it took his oldest child doing something awful to
make them stop. And he was sorry if he hurt anyone during all the drug
taken years but he couldn't remember who they were. The reporter said
what about your 8 kids,he said what about them.

I often wonder why no tests like alcohol and drug tests weren't done on
him. His neighbor was in the bed next to me when i was in the hospital,
I asked if he was doing ok. She looked at me like i took 1 pill to many
and told me they were both arrested for selling drugs from the house.

I do wonder when a Dr. tells you they will call in 2 days so try to be there,
and i have tried having them paged,left messages, and sit and wonder
why there is so much not caring. Oh i got the patient in the next bed meds
twice,calm down your not going to die from it. So what happen to Alan
was more then wrong,and that Dr. should of called busy or not. Sorry
about going on,i feel like i know you and i worry. Welll let's hope she calls,
because i know you will track her down. But why does it have to be that
way. It's not like the old days and they were busy to. Cycelops look out
she will have you laughing. :hug: :hug: :hug: Sue To many antibiotics!!

Sue: You crack me up!!!!

Melody

And as soon as SOMEBODY CALLS US UP, I'll post here.

Melody

P.S. I WOULD LOVE TO DEMAND A PUMP BUT I HAVE TO GET A DOCTOR TO CALL ME BACK FIRST!!!! lol

IVAC pumps
 

Hey Mel,

Plaaaleeez don't tell me they were not using a pump on Alan's IVIG. Even when I self administered my own methlypred by PICC, it had a pressure system in the bag..like a little accordian, that only administered so much per minute...I never, ever got IVIG without a pump, and I don't recall in recent history giving any IV meds at home to a patient without an IV pump. HMMM.

There are several different IV pumps, even ones we put antibiotics into that would last until the next day, and even some chemo ones, direct into the liver, where the bag was tiny and changed every week if I recall correctly.

I am surprised any home care agency would infuse IV fluids of any type without a pump any more.

I had a very good day today...and a good one yesterday (my 34th anniversary) I imagine tomorrow, I won't be able to move....or my whole body will feel like I was hit by a giant tuning fork. Oh well, there is always a day after tomorrow.

Oh and I am one of the lucky ones that doesn't feel my feet when I hurt them. They just decide to ache really bad after I am on them for a while, or for no good reason at night. I secretly believe they are some one else's feet, do you think? sometimes when my hands are numb and I wake up...it feels like some one else is touching me....I suppose that could be used to my advantage.....oh dear, there goes the imagination again.:D

I'm so sorry for all everyone has been through. Your hope,spirit and outlook is amazing. I'm learning so much not only on the medical but mental outlook. I agree about docs. I put in 5 calls that was saying how I was having weird symtpoms that were scary and never got a call. Then when I did it was a med assistant who said the doc would have to call back cause she didn't know. The doc never called. I know when I'm better hopefully I want to be some kind of patient advocate and work on getting docs more consequences when they don't do there duties. Really this is people's lives and there is more done to a waitress then to a doc when they make a mistake. Things need to change. I switched neuros but if your going to stick with yours is there a head person you could follow up with so this doesn't happen in the future?
Cyclelops happy belated anniversary.

Cyclelops. Happy Belated Anniversary.

And no, they are not using a pump on Alan. Just the iv drip. I asked so many questions of the IVIG company, the nurses and everybody involved. I was told, "yes we do the pump sometimes, but we also do the drip and as long as he is monitored, there will not be a problem".

And there never was. He tolerated it well (until the darn nurse made it to hours).

Believe me, AS SOON A SOMEONE CALLES ME, I will voice everything I've read here.

Melody

Thanks for the anniversay wishes...

And on the pumps...we gave up doing that by hand, well in the mid 90's. Obviously we could count drops and convert that to cc's per hour, better than the new nurses these days....as infusing something 25% faster than ordered, isn't usually a good idea. Now, that said, I got my IVIG a bit faster, but I had absolutely no problems during or after the infusions...no headaches, no fevers no nothing, so occassionally we finished up a half hour sooner...but my nurses used pumps.

I never, ever ran an IV without a pump in homecare since around 2000.
HMMM. Now I have been out of nursing for a few years, as I had a different business of my own, and now I am to unreliable healthwise to be counted on for a shift...(I can consult, lol).

I had a very nice anniversary and got a great camera...now to figure out how to use it. We also had one of our kids move out and I got a spare room...aaahhh-life is good....well, OK, the present 45 minutes ain't bad. :D Give me an hour.;)

I liked that one commercial for carpeting, where the kid leaves and the empty nesters get new carpet and try to find a new purpose for this room...they try dancing....they try bonsai trees, she knocks him out doing martial arts...and then they go back to having it the kid's room, 'just in case'. Well, this empty room, has no 'just in case clause'. It is MINE, alll MINE.....:eek: :eek: :eek: I now have a home office and I am changing the locks.

Change the locks and make it your own.

When my son moved out 5 years ago we made his room, the computer room.

I gave his (brand new) mattress to my friend for her grandson.

So now I am sitting in my son's room at my computer typing this message.

I always wanted a computer room. I don't sew so it can't be a sewing room.

I have a 30 foot living, dining room, so I have all my exercise machines at the opposite end. You should see people's faces when they walk into my apartment and there's a health rider, a Tony Little Air Glider, a cross country ski machine, and a little stair stepper, all neatly arranged in a row (just in case we want to do our workouts)

AND, NO, NO ONE HAS CALLED US BACK. I HAVE NO IDEA WHAT TO DO...

Melody