I met an awesome woman in the hospital

    • Anonymous
      June 7, 2007 at 9:13 pm

      Dell is in the hospital for a port and solumedrol. My 11 year old is with me and he befriended another 11 year with ivig. Then we found out they are across the hall.

      She AND her sister have lupus and R.A. Her sister is 16 and sicker than the 11 year old.

      The amazing thing is, the mother takes care of all of their medical needs. She acts as their nurse. They both have pic lines in the arm and nurses do not TOUCH the pic lines. She gives them their ivig, solumedrol and any other drugs they are on.

      The reason they are in the hospital, the 16 year old was having some complications.

      She said earlier in the week, the 16 year old had an MRI at the hospital. The guy that was giving the contrast screwed the contrast into the pic line and never cleaned it first. The mother, of course, told him to take it off and throw away the seringe.

      She got all of her equipment from a medical supply store. She has the same neurologist as we do. She said when she walked into his office with the girl’s doing ivig on their shoulder, the dr. was so amazed, he took her around the office showing everyone.

      I think it was meant to be for me to meet this lady, I would love to do this on my own too. I know you have to have proper training but it beats a nurse not taking care to clean things properly.

      p.s. She had to sign a waiver at the hosptial.

    • Anonymous
      June 7, 2007 at 9:22 pm

      Lori –

      IVIG is an extremely dangerous drug and should ONLY be administered by an experienced infusion nurse. I’m not sure who in the heck is letting her administer it, but she should not be. There are some very serious complications that can happen during an IVIG infusion, anaphlactic shock being one of them.

      PLEASE do not EVER administer IVIG to Dell yourself. I’ve been through MANY IVIG infusions with Emily & although I know exactly what to do, I would NEVER, EVER attempt to do it on my own. NEVER!

      That being said, I’m glad that you met her. I remember meeting a mom while Emily was in the hospital who helped me accept that Emi is a sick kid & I will forever be greatful to her. I don’t even know her name but I think I was meant to meet her.


    • Anonymous
      June 8, 2007 at 12:23 am

      Lori, In the case of you infusing the ivig to Dell, I wouldn’t take the risk. It can go bad in a very short time, and you might not recognize when and if it did. Ivig can be very dangerous, especially with children. I’m not sure if the dosage for lupus/ra is as high as it is for gbs/cidp.
      I had a picc line in during my pregnancies, I was taught how to inject myself, how to hep myself and i found out a clot can form really quickly, and its quite painful. granted giving myself all the treatments was easy, until the problem with the clot came up. I even worked a full time job while taking iv fluids and feedings, of course at that time I worked for an infusion company, so i had a nurse onsite that i could talk to when problems came up. In my opinion, i would just watch the nurses’ moves at all times and speak up if he/she forgets to sterilize, flush the line and so forth. i do that all the time, not only for myself but for anyone i’m around that is a patient. nurses are human, they can get distracted easily, alot of them appreciate the imput, and respect you more for speaking up.(i know alot of nurses). actually, they are supposed to inform you of everything they are doing, procedures, reasoning for the meds, application of meds, and some even tell you every step they do. the hospital makes them sign a wavier for legal purposes, its not giving them permission to do the procedures, its to cover the drs, nurses, and hospitals’ butt in case something goes wrong.
      I hope Dell has good results from his infusion. Give him Big Hugs for me please. Take care.

    • Anonymous
      June 8, 2007 at 10:23 am

      Lori, please listen to what we are all saying. IVIG is a tricky thing. What would you do if you made a mistake? I would never take on such a task.

      Please do not do this.

    • Anonymous
      June 8, 2007 at 11:10 pm

      Hello Lori,
      I know that when you met this woman it made you think how wonderful it would be if you could do the same for Dell, if his mom could take care of him, but listen to what we are saying. Something could happen that you did not expect. Wouldn’t you blame yourself if anything happened to Dell? Would you blame yourself and say “if only”. Can you live with that possibility. Nurses do IVIG’s for a reason, otherwise family would be shown how to do it.