Want to know how easily influenced I can be. When I read all the posts, my mind began playing tricks and I imagined Alan getting all sorts of reactions to this infusion.

I tried to go to bed, it was 12 a.m. and Alan starts moaning. I bolted straight up and said "my god, what's wrong, are you alright?" and he said "no, my feet hurt". I thought about it and I said "oh, maybe the nerves are healing because I read that if they heal they have to hurt first".

As he is igetting an infusion, he feels just great, he even remarked to the nurse, "this thing must be working because my feet are not in pain". She said "you won't believe how much energy this will give you".

He didn't even take a nap and he had just taken a benedryl.

So now fast forward 7 hours later, and he's in bed, and when he moaned, and said his feet hurt, I just massaged him like I always do. He said "no, you have to sleep, and I said "I can't sleep if you are in pain". and he said "but I'm always in pain, that's nothing new". I really want to give him the b-12 because I have no more burning, or anything. AND THE NURSE WAS ABSOLUTELY FASCINATED ABOUT MY TAKING METHYL B-12.

But I don't really know what I should do. If his nerves repairing, then they have to hurt first, right?? they have to wake up??? I explained this to him.

I just didn't want any reactions to the antibodies so I kept checking him and massaging him. He was in heaven with the massage but he couldn't sleep. I just gave him a benedryl. He took the first one at 4 p.m. so it's 1:30 a.m. now so it just might make him sleepy enough to go to sleep.

I'll see how he is tomorrow. I will have to decide what to do with the bags int he fridge and the note I typed up.

I have never had to face anything like this. He's been in pain for 15 or so years (and it was really really bad 4 years ago), so when he got the IVIG, we thought "hey we have a shot here". But this shot will take longer and there might be further side effects.

Oh, and this is important. The bag of gamma said to infuse over 4 hours.

Now every time a nurse comes here, she reads the instructions and Alan always says: 4 hours, right?, that's what the bag says.......and EACH AND EVERY TIME, the nurse goes into the explanation that ...even though it says 4 hours, it goes 10 grams over one hour, so you are getting 30 grams so it can really take 3 hours" So I always pipe in "No, it says 4 hours, he should get 4 hours and the nurses always smile and say 'they are being extra careful, believe me, if you were going to get a reaction, it would have been in the first 15 minutes, that's why the first 5 are always given in the hospital so they can monitor you. They already know you tolerate it.

She was in my house almost 4 hours. Yesterday, the nurse Magalee did the full 4 hours.

What is with these nurses and 4 hours. Why do they want to do it in 3.

I mean, ALL OF THEM GAVE ME THE SAME STORY.

It's like a mantra with them.

so I'll update after tomorrow.

Pray all goes well.

Love Melody

Keep the bag....do not surrender it to any doctor or the infusion place.
They will try to take it away from you---it is evidence. And keep all tubing and the saline bag also.

If something should result with Alan---and it might take days to show up...
that bag is all you have.

And write down exactly what happened... all the details you recall.
And keep a copy of that too. The time and date the infusion was given,
all of it.

We all hope nothing will happen, but if it does, you need to be prepared for
any legal consequence. People in good health generally may not be at risk for an error
like this....but if mrsa got in there...it might be a different story.
The seminar I attended last Friday had slides showing a desperate man doing his own
occipital (back of the head) blocks with a syringe...no aseptic (clean) technique...he just shot
the lidocaine into his HAIR covered skin... The doctor showing this slide remarked that it was a miracle this patient
did not have an infection yet!

Mrs.D. Here is what I did!!! Last night I wrote the following note to Frank, the paramedic who does all blood work or Dr. Fred:

--------------------------------------------------------------------------

Frank:

Alan had an IVIG infusion yesterday. Date of infusion 5/22/07

I took the bag of GAMMIMUNE out of my fridge 1 hour before the infusion. I have been told to do this. As I already had the IV pole set up in the living room, I simply hung up the bag on the pole. THERE WAS NO LEAK.

When the visiting nurse came to our home, she opened a pack of fresh tubing and she attempted to connect everything. She then said “Oh there’s a leak”. There was no leak when I hung the bag on the pole.

So she tried to tape around the connectors. Did not help. Still a small leak.

Then she went out to her car and got a bag of Saline.

She emptied the bag (via long plastic tubing), into the sink. And she then took a large hypo syringe thing and transferred the Gamma stuff into the empty saline bag.

All the while, she wore gloves.

The people on the neuropathy board told me to give Dr. Fred the two bags and tell him what happened. They are afraid of contamination.

How do we check for this??


Melody ------------------------------------------------------------------------

Now, Mrs. D. because of what you said, I kept the bags in the fridge. I just gave Alan the note to give to Frank, so Dr. Fred could see it, know what happened, and they can put the note in his file. Better safe than sorry right, and now we have it on the record.

The only side effect of this infusion was that he was exhausted when he went to bed. This happened during his first infusion in he hospital but they said that was normal, (to get a little headache and they gave him tylenol).

Last night his toes were driving him crazy and by 1 a.m. he still could no sleep so I gave him a benedryl. It did the trick. He seems fine this morning, just a little tired.

Now this was his 8th and 9th infusion and he took the benedry and two tylenols 30 minutes before each infusion.

The ONLY DIFFERENCE (other than the hole thing) in yesterday's infusion, was that she did it in 3 hours, explaining that 3 hours was fine (like they all say) and of course we said 'but he's supposed to get 4 hours) and she went into her spiel about 10 grams per hour so he got 30 grams so 3 hours is perfectly fine.

Now what exactly am I supposed to look for if he does indeed get an infection.
I would think fever, chills, I DON'T KNOW WHAT ELSE TO LOOK FOR.

Does it hit you like a ton of bricks, do I see any visible signs.

Please let me know so I can keep a watchful eye.

And do you think I should call up Marathon Visiting Nurse Service today (the contact person there and myself have a very good relationship. WE speak to each other about when the nurse is supposed to show up, etc. She is wonderful and she calls me Miss Melody and we laugh. So she's easy to talk to.
Do I tell her what happened (just the facts), or do I said "this nurse should NEVER HAVE DONE WHAT SHE DID, SHE PUT MY HUSBAND AT RISK. BLAH BLAH, or do I say "I would just like to tell you what happened. There was a hole in the Gamma bag and she did an amazing job of transferring the gamma from one bag to another." See, this tells her what the nurse did, without ME GOING ALL JUDGMENTAL ON THE PHONE.

I don't want any problems. with this nurse. We won't be having her again, so can I just calmly explain the facts and say "we were amazed that she was able to rig up a transfer so Alan got the infusion"

See, I know how to talk to people, it's all in how you deliver the information. No ranting, no raving, just simply stating facts. I learned that from my father and I've used this method all my life. If you don't yell your information, the other side listens better.

I know you understand what I am saying.

Let me know, okay??

And thanks much.

P.S. Because there was no hole when I hung up the bag on the IV pole, do you think the nurse accidentally punctured the bag. She really used all sanitary protocol during the whole transfer.
And isn't MRSA in hospitals? How can it get into Alan, if the bag wasn't leaking when I took it out of the fridge?

Melody

Personally i think the third option is the best, you get across what happened but in a non threatening way, that is of course assuming that the person that you are talking to knows what the proper procedure is. Whats done is done but for future reference, everyone involved is being paid big bucks to do what they are doing and supplying what they are supplying. If it isnt right dont accept it. You are doing all you can at this point to observe how he reacts and to preserve your evidence. I would also print up this thread also as proof of what went on since you posted several times to show the time line.

Joe: Ooh, that's a good idea!!!! I'm printing out this thread. But Joe, while it says "Posted Today, or Posted yesterday", it never specifically states: "Posted March 22, 2007". I saved it all to my hard drive and I can print it any time I wish.

Jeez. imagine waiting to see if your husband come down with a MRSA type of infection. I don't even know what I'm supposed to be looking for.

When he got up this morning, I expected him to be all exhausted, all achy, well, I expected him to be SOMETHING!!!

He gets up, takes a shower, I get up and go over and put my arms around him and say "how are you, how do you feel"??? and he says 'oh, I'm fine,", I'm off to Dr. Fred's office to get my blood work done. This was his regular appointment for blood work.

That's when I carefully explained what the guys on the boards said and how we should just make a record of what happened in the kitchen, and we should save the bags in the refrigerator. I showed him the note I wrote, half expecting him to start yelling "Oh my god, they think I have MRSA??" (BELIEVE ME, HE DOESN'T KNOW WHAT MRSA IS). But he just said "oh, good, you wrote a note, I'll show it to Frank and he'll put it in my file.".

Let me say one thing. WHAT WOULD THIS MAN DO WITHOUT A WIFE??? I would just like someone to tell me.

See, this is where I get all emotional and hostile about my son who left home 5 years ago and couldn't care less about us because he is a gambler who also has aspergers.

Anyone else would call up their son and they would get comfort and phone calls and be told "mom, what can I do?".

We never get that and we WILL NEVER GET THAT!!!!!

Sometimes, it gets very hard to have all these health stuff going on (and believe me, you guys have it a lot worse than Alan and I), but sometimes, it would have been nice to have a son who gave a damm.

I guess I have to get over my pity party.

He'll come bouncing in the door any minute and I'll just massage him to death like I always do. I do Rolfing down his back and goes into heaven.

But I'll just wait and see how he's feeling.

Exactly what should I be looking for? (if the bag was contaminated).
Thanks,
Melody

Hi Melody:

In answer to your rhetorical question "What would Alan do without a wife?": My answer is: "What would any man do without a wife?"

(Having typed that, dodging cyber bullets and tomatoes!)

So glad that Alan is doing all right this morning. Relieved hugs to both of you.

Shirley H.,

I would keep the bag too - as evidence - you dont know what may happen down the line - as Mrs D Said..... and again, contact those concerned.


ALso, the nurses try to hurry the home infusions because they want to get along on their schedules - again - the doctor sets the rate - not the nursing agency...... you need to mention that to your doctor too... it is not true that side effects only happen the first time - there is a chance of going into shock that is high with every the beginning of each infusion which is why they usually run it a bit slower at first and why with every infusion you get benadry and pain killers, to try to prevent side effects all thru the infusion - which can be made worse if the nurse tries to run too fast..... they are not following your doctors instructions and he set up the rate for Alan, not to accomodate the nurse.... they are trying to make their day shorter.... Alan is the patient and instructions are made by the doctors, NOT the nurses.......

Melody in a few days it will have the date on the post. After it passes the today and yesterday stage. I really dont know what to look for except any rashes or fever or not feeling well.

As far as another comment from another poster what would men do without wives, there are many men, such as myself, who have to stay on top of things also or else it wont be taken care of.

I also commiserate with you about your son, I am having a lot of problems with my 16 year old and am desperately trying to save him, turn him around. Its heartbreaking.

I would ask of all parties involved about the proper protocol -
of the drs time line infusion orders,
and what is the proper thing to do in case of a leaky IVIG bag?

Get that info in writing if you can.

but I really think the nurse?? did not follow correct procedures with the transferring.
I would think there should be some rules in place for this sort of situation.
she should at least called her office to report and ask how to proceed.

and how do you know that any residue might still be on your sink or counters?
You might ask about the clean up of it also, just to be sure.
I don't know if it could hurt you that way or not .. but..

Mel

It doesn't matter who poked the hole in, regardless of how the hole got there, it was a potential source of infection. You can't tape a hole in an IV bag...or a hole in an IV tube. You can tape connections of tubes to keep them secure, provided they are working to being with...you can not tape a 'leak' to stop it anywhere in the system....Forbotten!!!! NIX, NIE, in any language.

IVIG is given at x number of milligrams per minutes. If his time is 4 hours it is four hours....you may not know this but some agencies pay nurses by the visit...the shorter the visit the more pay they make, as they make more visits...they make exceptions for IV visits as they take longer.

IVIG is generally mixed by the pharmacy and delivered to the place of infusion. I had mine at an infusion center, which they insisted on me going to, despite being a home care nurse myself. Why? Because, one bag of IVIG contains antibodies from over 1,000 donors, and you never know when one of those donors may have some offending antibody which causes a reaction. usually people have a reaction right away, but not always.

Now the thing to do is watch for signs of infection, which are not the same as signs of infusion reaction.

This is not a minor error on the nurses part....what does she think she can do brain surgery too???

Alan likely has an immune system that can handle any germ he got, but you need to call attention to what occurred to you.

Call and speak with the nursing supervisor or director of nursing...not the secretary or scheduler.

Call your doc and let him know what happened.

You are likely going to be unable to prove how the hole got there and that is irrelevant...simply the fact that there was a puncture in the bag is enough to assume it is contaminated.

Transferring contaminated contents via sterile procedure is a joke.

Think of it this way....hm, some cockroach poop got poked into this bag and now I am going to sterily transfer the contents into a new sterile bag...(even though I am transferring cockroach poop contaminated liquid into a new bag.)

This is just an illustration, not what actually happened, but microbes are very tiny, thousands can enter in a pin prick. Millions enter our bodies everyday and we fight them off. Alan will likely not have any problem but if he does, you have the right to establish that this is how they entered. Again, who poked the hole doesn't matter....the dumb move was infusing it!

With people with autonomic neuropathy, they sometimes do not know they are sick with an infection....Just let your doc know. I would feel so much better...and call the Home Care Agency. This nurse needs to be corrected and realize that this is not appropriate practice.

Just give them the facts...Mel, write down the facts---do not say more than the facts....do not make assumptions---just the facts...

She hung the bag
A leak was found
She wanted tape to tape the leak
She transfered contents...blah blah blah.
Facts only....no assumptions.

Let them know about the infusion time being cut short....it is OK in some circumstances when you are being monitored....I was monitored with BP, P and Temp every 15 minutes, for every single bag I ever had infused....and this was at the infusion center....which was the only place they would allow me to have it infused...as it is a blood product. If orders say over 4 hours, and it is in the home setting, I would do it in 4 hours. It makes me wonder if allan got his whole dose...how much was lost in the leak etc.

Do not panic...do not accuse....again, write down what you are going to say, and just read your script.