My nurse left during the infusion

    • Anonymous
      December 9, 2007 at 8:38 pm

      Friday was Dell’s day for ivig. The nurse said she was leaving for lunch. I told her I was not comfortable with that. She called her boss and the boss said since Dell had already been receiving ivig for over 3 hours, everything should be fine.

      I will be calling the home health company tomorrow but I want to sound a little knowledgable.

      I have looked up anaphylactic shock on this site and googled it. I understand all the symptoms but can it happen ANYTIME during the infusion?

      Have any of you experienced it?

      Thanks, Lori

    • December 9, 2007 at 9:03 pm

      LORI, THAT WAS THE WORST NIGHTMARE I EVER HAD! I imagine if shock was going to happen it would be within the first couple of hours. Regardless, in the event it did, it would be hard to maintain your composure, grab the iv push of benadryl and hook the bag up to deliver it even if you were a nurse.

      Our problems when the nurse left were due to infiltration and bad pumps. Kevin was in so much pain and the arm was swolen and the ivig was leaking out. I called the nurse and she was shopping and 1 hour away. Kevin was screaming, I pulled the needle out. The next day, they left again to go to other patients and assured me this procedure was protocol. Well, the pump kept beeping and air bubbles were a problem, turns out she crimped the line when she fed the line through the machine. The third day after 7 hours of infusion there was about 30% ivig left and the infusion was supposed to be over. The pump was broke and she told me it was no big deal and got rid of the ivig. Was I stupid or what!!!

      My point is, there are so many variables, not just a reaction. Maybe you could offer lunch and a quiet room for her to be in for some alone time if in fact it is part of your companies protocol. At least she would be on the property if there was a problem. Our new infusion company Coram, is so wonderful, they never leave, monitor blood press, temp. and heart rate every hour. They sit and watch movies with us, play games and eat lunch and dinner with us. This is two different nurse that give us such great treatment. The one nurse is a guy and even shoots airsoft guns with Kevin out the window from the couch!!!

      Call the agency and see what their protocol is. If you don’t like the answer, switch, I did! You are paying big money for the ivig and You are their employer. If you don’t like them, fire them!!!

      We start again tommorrow.

    • December 9, 2007 at 9:11 pm

      Sorry, the most important question was forgotten. They say, reaction only happens with in a couple of hours. I do not believe it! Kevin even gets reactions hours after the infusion is over. Who is to say to what degree they will happen. EVERYONE is different! Dell is so young, I would not take the chance!


    • Anonymous
      December 9, 2007 at 9:17 pm

      Lori, NOT ACCEPTABLE!!!! I actually died from anaphylatic shock in my dr’s office. They were not aware of the problem until 2 and a half hours later when they tried to get me into my car with my hubby. I was lucky I have a wonderful nurse and knowledgable drs who knew to call life squad when they did notice I was in respiratory distress.
      To leave a patient, especially one that is soo young, is not normal protocol. Maybe if it were only an iv for antibiotic infusion, or feedings or things that aren’t quite as life threatning, it might be protocol-but for ivig infusion in a child-NOT!! If it were my child getting the infusion, I would raise the roof!!! Find another home infusion company Lori. Please give Dell a Big Hug for me!

    • December 9, 2007 at 9:40 pm

      I just thought of something, do you even have a anyphilactic kit(spelling) The first infusion company never even sent one until I investigated protocol and figured out we were supposed to have one!

    • Anonymous
      December 9, 2007 at 9:40 pm

      Emily’s nurse NEVER EVER EVER leaves while doing an IVIG even for adults. She would starve to death before putting the life of her patient at jeopardy. I would NOT stand for this at all. I know you don’t have many options for home care there but I hope that you can find another agency or at least another nurse. For her to leave even after you stated your concerns with that is not only crazy but also unprofessional.

      Most people would go into shock within the first little bit of infusion – I think within the first hour. However, I’ve heard of people having to have their infusion slowed down or completely stopped after 3-4 hours. Emily’s nurse used to see an older woman who had a problem with only 1 hour left of her infusion & it had to be slowed way down – which then put the nurse behind schedule by 2 hours for Emily.


      I wouldn’t stand for a nurse leaving for lunch. She should have known to bring her own food or even asked if you had something to snack on instead of leaving. Definetly contact the agency & register a complaint.

      I’m glad that Dell did fine while she was gone & I’m sorry you had to go through that. You could also complain to the dr about it & see if he can get something done, if the agency director won’t listen to you.


    • Anonymous
      December 9, 2007 at 9:49 pm


      I have been receiving IVIG since 1989ish off and on, never in that time has a nurse ever left me to finish up my own infusion or even to run an errand or lunch. They have always stayed from beginning to end, granted they show me how to jab myself with an epi pen, but that is in case I should have issues while they are in the bathroom, not gone. I would call the infusion company and get answers, seems wrong to me.


    • Anonymous
      December 9, 2007 at 10:46 pm

      i would call in AM and get hold of the Director of Nursing plus the owner of the company. Get their protocol for the IVIG infusion, and then raise heck. A nurse should not leave during an IVIG infusion. PERIOD, end of story. I would write them up and report them to the agency that covers home health or who oversees your insurance.
      Then I would get a new company.

    • Anonymous
      December 10, 2007 at 7:35 am

      Thank you for all of your posts. I will call this this morning. The only problem.. I have to be nice, they are the only company in our area. If they don’t do it, it’s back to the hospital, an hour away and I don’t want to do that.

      I’ll let you all know what they said.

      Love, Lori

    • Anonymous
      December 10, 2007 at 10:29 am

      I called the nurse’s boss and she agreed to tell the nurse to bring her lunch. I told her I always offer all my nurses all the drink and food they want. I also told her they are welcomed to go sit in their vehicle for awhile, just to get away since they are here for almost 8 hours.

      Thanks for all your posts,

    • Anonymous
      December 10, 2007 at 11:09 am

      At least she will be present or reachable. Eight hours is long, but, that is what the nurse has agreed to do and that is what she should do. Is it going to be a different nurse?
      Glad you got this settled..

    • Anonymous
      December 10, 2007 at 12:42 pm

      There are a few nurses they pick from. One is a full time infusion nurse. I think she only gives ivig. A few other times, I had 2 other nurses. They work part time for the company. I like them all but if I had to pick, I really like one. She’s born the same month as me, all her children are in Catholic schools, like us and we just have a lot to talk about all day.


    • Anonymous
      December 12, 2007 at 2:16 pm

      By state law an infusion IVIG nurse can not leave a patient at all”’ Ever””’ They bring their breakfast, lunch, drinks and snacks for my refrigerator. They ask to grill a sandwich, microwave or whatever. I provide a very clean house, comfy sitting, tv, magazines, cozy front porch and some nap as they are tired. They can text, cell chat and get on laptop.
      It’s part of the job they are being paid for.Maybe I walk a letter to the mailbox but they are with me for how ever long I takes.
      Because so many home health nurses are not reliable my neurologist only uses his own staff nurses.
      How scary this must of been-hope it goes better.

    • Anonymous
      December 13, 2007 at 9:15 pm

      [I][FONT=Palatino Linotype][SIZE=4][COLOR=purple]I think I’d be contacting someone & filing a complaint over this. Debbie had IVIG several times here at the house, the nurse worked for a home health agency. The nurse told me then under no circumstances was she to leave, that if she did she could lose her job. I live in a rural area of Ky but take my word for it, there are quite a few home health agencies here. They did travel a good distance to get to this area.[/COLOR][/SIZE][/FONT][/I]