Please Teach Me about home IV's

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MOM247

New member
Hi there,

My son is almost done w-his 1st round of Tobi. He also finished Cipro Friday. He cultured Pseudomonas at his last culture. My question is there anything I can do a head to setup home IV nurse care ahead of time? I'm praying like crazy he kicks it, but I always feel better if I have some idea what's coming next. I've read how some CF'ers start IV therapy in the hospital and go home on them. I'm hoping that this might be an option. Are there classes I can take?

Thanks,

Sarah aka crazy cf mom

mom to Johnny almost 6
 
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erock77

Member
Hi Sarah,
I just got off home IV's. Just culturing PA might not be enough to do home IV's, it'll probably depend on how he's feeling, his PFT's compared to his baseline, and how much he got better on Cipro and Tobi. It's up to the doctor, but if he's still culturing PA you can always push for the big IV guns.
I never had a class, but if you're lucky enough to have a nurse come to your home, they'll give you a lesson on how to do it. And usually the homecare places have a nurse on-call 24/7 for questions. In general it's pretty easy these days. When I was 8 (in 1985) I was mixing solutions, playing with needles, etc. It's so much safer and easier now, most of the time it's pre-mixed and you just hook a couple tubes together and twist the end into the IV cap. A few days to start in the hospital could be a good thing, it's easier for one, since they do everything. And you can both get used to the IV concept. I used to actually like the hospital as a kid. But CF'ers could hang out with each other, which we can't do now.
Good luck!
 
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rosesixtyfive

New member
Hi, Sarah, My little boy just had a PICC line, and it was really amazing the new technology that someone put out there. His meds came in a bottle, inside the bottle was a balloon filled with meds. The balloon deflated as the IV infused. My son is 3 years old, he could carry the bottle from room to room and sit and play while it ran. We had to administer the meds every 8 hours. It was not hard to learn how to administer and we were in and out of the hospital after one over night trip. Hope this helps. rosesixtyfive, mother of Sam, ddf508
 
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running4life

New member
I was on IVs for the first time right before my 25th birthday. It was SUPER simple. I was in the hospital for 3 days with a PICC line, came home and did two more weeks at home. I think I did about 6 rounds a day with two different antibiotics. I learned to flush the line and all that. A nurse came over the first night and was there for an hour maybe. She was super nice and then they came a few more times to draw blood and change the dressing. Don't stress - it's very easy.

Mine came in little balls that were pressurized. As soon as I attached them to my PICC, it would deflate automatically within an hour. I could move around and even go places while being attached to them. I don't remember what it was called. It's just what my doctor ordered and insurance covered. There were no pumps or machines involved. It was great.
 
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MOM247

New member
Thanks everyone for calming me down:) I also spoke to a nurse at my sons CF Clinic today. She reassured me they don't normally admit, but if "it" shows up they will throw more Tobi at it. I feel like we can calm down now. The last couple weeks I've been running around getting things prepared. Oil changes, new pillows, buying new comfy clothes, cleaning closets. All the things I wish I had done before are emergency bowel obstruction hospital stay:) Yes, I know I'm crazy:) Thanks again for calming me down.

Sarah
 
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bigstar

New member
Sareh please dont waste any energy worrying upon that. Just enjoy every moment with your kid. Take my word for that. And if it comes to IVs a day or two in the hospital will fully educate you on how to use the meds. Its easy. Me and my mom learned quite quickly. Dont worry. We have many weapons against CF nowadays and we are always waiting on better ones.

Love, bigstar
 
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MOM247

New member
Hi there,

Great news today:) Johnny's recent culture came back with just normal Flora. No pseudomonas!! Thought I'd share:)

sarah
 
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