Dell is starting home health

    • Anonymous
      June 18, 2007 at 9:01 am

      We are so excited. Dell is starting home health this week. We have been going to the hospital for overnight stays for about 2 months. It’s so hard on me and the entire family.

      I’ve been speaking with Cindy and Kelly about home heath. They have really helped me but if you have any information that you feel like I should know, please send a reply.

      I already told the coordinating nurse that I want someone who is very “clean”, meaning accessing his port. There is not alot of companies to choose from around here so I hope we get someone good on the first go around. Hope she’s nice because we will be seeing alot of eachother.

      Love, Lori

    • June 18, 2007 at 10:20 am

      I do not know what the norm is, but make sure your doctors orders include the nurse staying the whole time. The nursing agency we had the first time took advantage of the doctor not wriing that in the order. CLEAN, operative word! The one nurse mixed Kevies ivig (powder) while on the basement floor with my dog running around! ALso, make sure you get every drop! I still do not know if it was a faulty pump or a faulty nurse, or both, but we had some issues and they kept clearing the line wasting ivig! Also, because the pump said one number for amount of cc’s that went in (360 for example, and they knew they only mixed 270 cc’s) they just made up some excuse and told me it was extra. BULL, there was only a set amount of saline and ivig powder, the pump was broke and running slow and they did not feel like waiting till the medicine was gone. The pharmacist figured it out ( i extracted the left over in a syringe) and Kevinmissed 17 % of his infusion with wasted ivig.

      We are having another 3 day infusion tommorrow, hopefully the last! I don’t even think he is any where needing one, but I do not want to leave us high and dry without a neuro because of my gut feelings. He is the dr., and he knows more than I. But that is a whole other story. Anyway, I asked about a fanny pak for Kevin, the pharmacist and the nursing company advised me against it, they said it causes issues with airbubbles which lead to clearing the line, which leads tho more wasted ivig. I know Cindy has good luck with it, but they have a port (as do you) maybe that makes a difference in the delivery?

      Minus the awful nursing, it was way better at home, comfort, privacy, and a more relaxing environment. Good luck! Dawn Kevies mom 😮

    • Anonymous
      June 18, 2007 at 11:17 am

      Lori – I am so happy for you all. Call me if you have any questions. Remember, make sure that nurse uses sterile technique. I ALWAYS ask that they clean the port site with 3 alcohol swabs AND a Chloraprep before accessing. I know that one or the other is usually enough but I like the added protection, kwim?

      Dawn – You can ask for a bag. We call Emi’s a backpack. We make sure to hang it up (usually on the arm of the couch) and if Emily needs to get up to walk around she knows how to carry it. As long as you keep the bag elevated vertically, then you shouldn’t have any problems with air bubbles. AND mixing the medication is usually where most of the air comes from. IVIG is bubbly anyways but if you get someone that isn’t gentle with it, then you get more air bubbles. You can also tell the nurse that after she puts the IVIG into the pooling bag (the clear bag that hangs) that she can use a syringe to remove the air bubbles. Some nurses are too lazy to do this but I will insist on it if there are too many bubbles in the bag.


    • Anonymous
      June 19, 2007 at 10:53 am

      Hi Lori. I just wanted to give you a word of encouragement. I’ve been getting my IVIG at home for nearly a year now, and it’s been great. I really like my nurse (I think I lucked out!) and she definitely knows what she’s doing. The IVIG I get is premixed (Flebogamma) so bubbles aren’t much of an issue. Sometimes the pump will sound an alarm and stop because of what my nurse calls “champagne bubbles,” but she just flicks the line a couple of times to send them up. Also, I always get all the IVIG — it’s way to expensive to waste! — and bubbles don’t seem to have any effect on that.

      Hope all goes well with Dell,

    • Anonymous
      June 19, 2007 at 8:46 pm

      Thanks to ya’ll for your posts.

      We received the meds. today from a real nice guy. He’ll be coming each week. The nurse seems very nice on the phone, can’t wait to meet her in person.

      Love, LOri