home inf.does your nurse leave,you monit. blood pres. & discon.iv&flush iv?

Where did the nurse go?

The nurse MUST remain in the home to monitor him. He MUST have his blood pressure taken, pulse, & temp taken at the start of the infusion. Then it is usually taken every 15-30 minutes for the first hour then every 30-45 minutes for the 2nd hour. For the last hour Emi’s nurse only takes it once. IVIG is a dangerous drug. It should ONLY be administered by qualified personnel…not mom’s.

I’ve been through MANY IVIG infusions & I know the drill but I would NOT ever be comfortable with taking charge. I can flush Emily’s port but that is because I flushed her Broviac catheder everyday. I can also pull her port because I had to learn in case something happened while accessed & the nurse wasn’t here. I can also disconnect the IV tube from the port & I know how to turn the pump off. I DO NOT EVER take Emi’s blood pressure or pulse. That is for the nurse to do ONLY. I will take her temp but that’s fool proof.

You need to call the home care company FIRST THING in the morning & DEMAND that you get a new nurse that does his/her job. That is what they get paid to do. YOU are the boss & they work for you. That means that you don’t get told what to do while they are off doing whatever. It is the nurses responsibility.

In the hospital would you expect to have to do those things? NO, it is the nurses job. The same thing applies for home care.

If this is how the home care company operates then you need to find another one. We use Critical Care Systems. They are a nationwide company. Maybe you have them in your area as well. If you can’t find one on your own your hospital should have a social worker or patient advocate that can hook you up with homecare. That is how we found ours.

GRRRR! I am MAD! Email me or call me if you need anything.

Emily’s nurse comes tomorrow & I know when I tell her about this she is going to be FLOORED.

Kelly

I was infused weekly with IVIG & solumedrol at home for 8 months, then with just the solumedrol for another 1 1/2 years. I was 48 at the time, & never did my nurse leave my house during any of my infusions. I think this is a very complicated infusion, with the changing of the speeds, etc. & even in the hospital many of my nurses were confused at first. You should not be left alone to do the job that they are paid to do!

OH Dawn, I feel soo bad for you! Call the nursing company and DEMAND a new nurse! No parent should have to be responsible for giving the ivig treatment, especially to your own child. I’m as upset as others are.:mad: as stated before, no nurse should leave the house while the infusion is going, because of all the problems that could arise, as you found out. obviously that nurse had never worked with ivig infusions before! go with your gut feelings again Dawn, if it feels wrong, then it is wrong. Give Kevin a Big Hug for me. Take care.

My husband, John, just had his first 4 in-home IVIG infusions last week. Never for one minute did the nurse leave us…she did all the monitoring and medical care. [U][B]Demand[/B][/U] a new nursing agency if what happened to Kevin is “protocol” at that one. The poor little guy…as if having IVIG isn’t enough for him to deal with!

Dawn, I can’t imagine how you are feeling right now! I am crying as i type this, i just want to send you and Kevin BIG HUGS!!! i don’t have the answer for Kevin, my heart just breaks everytime i think of Him saying those words. FIRE that care agency!!!! Demand a nurse stay the whole time-NO EXCEPTIONS!!! you are getting the run around from that care agency. There is no such protocol when IVIG is being infused! its protocol for regular ivs, there is really nothing to those, but ivig is soo much different. Was Kevin premedicated with tylenol and benadryl? Oh I just want to climb thru this puter and give you a Hug! it makes me soo mad that a nursing sup would tell you that garbage and get away with the problems, pain and suffering she has caused. please make sure you document all of your problems and names of those involved. you might need it later.
Kevin, You and Your Family are in my Thoughts and Prayers! please keep us posted and take care.

Dawn,
I just want to say ditto to everything Cheryl just said!!!!!!!
I get IVIG but not at home. I have been asking for it but my neuro refuses. He stated he has not had one experience with agencies that have been good in my area. He doesn’t trust them. After your experience i don’t think i will push him anymore. I know there is good ones out there for other ppl but you need help. I wish i could just drive over and help you. I hope today is a better day for him. Please, please keep us posted.
Hugs to both!!!

Dawn,
The nurse absolutely should NEVER leave. I get home infusions through UltraCare. The actual nursing fee is minor (few hundred a visit). The nurse not only premedicates and takes my temp, pulse, and BP before starting, she checks BP and pulse regularly. Also their protocol is to draw blood and collect a urine specimen for analysis before each infusion to make sure the IVIG isn’t causing any harm. The total for each infusion, including nursing fees, supplies, IVIG, and lab work, has been about $10,000. I have BCBS of Illinois PPO and they are an in-network provider. Call your neuro and BCBS and see if you can switch agencies. There’s no way that what you experienced is standard of care.

Caryn

I have home health IVIG and the nurses NEVER leave my house. I could have a reaction like I’ve done in the past.
When I was at a clinic/home for over 100 infusions I was monitored carefully with blood pressure, extra fliuds, nausea meds and something for the IVIG caused muscle spasms.
A lot of home health nurses are not experienced with administering IVIG. They tend to run the infusions way too fast causing severe nausea/pain/headaches. My drip rate was never over 60-75 for 10% IVIG solution and 150 for 5% slolution.
There isn’t any excuse for leaving and definitely not with a youngster who has a vein IV-not a port access.
The machine at home keeps acting up and the nurses must rig it somehow to work. They’ve even had to calculate using the “drip method”-counting the drips per minute to compensate for the broken machine.
I have Blue Cross.
### My neuro sends HIS OWN nurses because he doesn’t trust any of the other home health nurses”””” ###
At top nurse pay they were charging $ 40.00 an hour at the clinic and it’s about the same for home agencies. Total/8 hours: $ 320.00 a day.

I have home health IVIG and the nurses NEVER leave my house. I could have a reaction like I’ve done in the past.
When I was at a clinic for over 100 infusions we were monitored carefully with blood pressure, extra fliuds, nausea meds and for me a tranquiler Ativan for the IVIG caused muscle spasms.
A lot of home health nurses are not experienced with administering IVIG. They tend to run the infusions way too fast causing severe nausea/pain/headaches. My drip rate was never over 60-75 for 10% IVIG solution and 150 for 5% slolution.
There isn’t any excuse for leaving and with a youngster who has a vein IV-not a port access.
I have Blue Cross.
My neuro sends HIS OWN nurses because he doesn’t trust any of the other home health nurses””””
At top nurse pay they were charging $ 40.00 an hour at the clinic and it’s about the same for home agencies. Total/8 hours: $ 320.00 a day.

Because it’s his reputation at stake to recommend that particular service. Let him to the complaining…I bet once he hears that the nurse actually LEFT [a total NO-NO!] HE will hit the roof – and do all that needs to be done to get your child properly treated. Let the docs, the service, and the insurance company do the fighting-the doctors write the protocols for each patient…the service does not.

Dawn,

I have been getting infusions for almost 20 years and the nurse has never left, that is just plain dangerous. Who is doing your infusions now, which company? or is it through the hospital? Call me if I can be of help.

Jerimy

I can’t believe the neuro is passing the buck telling you to take your son to the ER. There was another thread posted recently by a lady who kept getting sick after infusions and had repeated trips to the ER. The ER, her neuro and family doc all was not leveling with her telling her it probably was an infection. It was a reaction. It’s up to the neuro to make sure you/your family member is treated well while in their care and to be resposible for the reactions from infusions.
The infusion rate can make you very ill-nausea/migraine/pain. Sometimes the machine must be stopped or slowed. The rate of infusion is slowly raised by the nurses-mine take 2 hours to get me up to full speed that I can handle. I have asked it to be lowered/stopped when I feel ill.
Please write the home health company and the state licensing board-this such not be happening. Especially to a small child.
You may want to look into finding another neuro-how can he keep recommending a BAD infusion agency??
May your little boy do much better soon””’
It’s so late and my nurse will be here before 7:00 AM. I did make my famous cookies she likes.If only the cat would not try to chew on the infusion tubing”’ It’s too $$$ to lose a precious drop””’

IF so, print out the ‘prescribing information’ off the website and GIVE it to the infusing nurse, neuro, ER wherever…Highlight the ‘rates’ parts and the ‘side effects’ parts. I’ve memorized mine, it could save a life…yours!

Dawn,

I know this response is late. I don’t have internet at home. I’m very sorry that your son is going through this (as well as you). GBS is truly horrible. The only answer I have is from my own struggles with GBS. I too felt that God was somehow mad at me or displeased with me. I felt punished and at fault. It took me many months to realize that God was not punishing me and that He cares so much, even about every little detail. It took prayers to realize this. I also took comfort in scripture, Psalm 103 and Psalm 91:11. God is not a big bully waiting to strike us down and punish us. He loves us more than we can imagine, and yet, living in this world unfortunately brings sickness and grief. The good news is that God is bigger than this struggle. I pray that Kevin and you will be blessed with a wonderful encounter with God during this difficult time, and come to know just how much He truly loves you both.

Pamela