Hi again, I posted about my daughters pft's being low a while ago. Thank you for the input. Now I have another question. She did pft's a week ago after being off antibiotics for about a week and a half. Her fev1 was 71% so she she was put on prednizone for 7 days and we tested again. This time her fev1 was 65%. We are giving her a week break and then most likely doing a bronchoscopy and sending the samples away from some special testing. The Doc said then we will probably do i.v.'s again. Our choice of in the hospital or at home. This is a big step for us. She just had a 21 day round of i.v.'s followed by 30 days of oral and 7 days of the steroid. This seems like a lot to me. She seems better to me but I do notice her getting out of breath sooner than she used to. She is only 6 and has a very hard time with i.v.'s. Does anyone have any ideas on how to make the upcoming bronchoscopy less tramatic for her? She would rather have a pickline than an i.v. Alfo what's you input on home i.v. versus hospital? I have two boys, 10 and 12, at home too. Last time we did 7 days at home and I felt like I never slept and I remember saying I didn't want to do this again. My husband was laid off his job after 14 years when we got home from the hospital last time, and we have no doubt it has to so with our medical costs but there is no way to prove it. Anyone ever had this also? Sorry if I sound like I'm whinning, I'm not trying to. Just need some input on what others do in these situations. Thanks, Michelle
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
bronchoscopy
- Thread starter anonymous
- Start date
Hi,I am 20 years old with cf, and for as long as I can remember, I have done my IV's at home, and I MUCH prefer it. I usually spend the first 2-3 days of my treatment (which I usually do for 21 days) in the hospital, so that they can get my dosages stablized and all that. But being at home is a lot better for me personally. When I was younger and couldn't do the medicines myself, my parents would usually trade off, one of them doing the late night dose and the other doing the early morning dose (I usually do one medicine every 8 hours, the other every 6). That schedule made it easier for them to not get worn out too quickly. Also, I don't know if your home healthcare company offers these, but I have always used Intermate medicine bottles, which are little tiny bags of medicine encased in plastic, instead of having the IV pole and bag. These little bags are so little they can be carried anywhere, so I once I am feeling up to it, I can be on the go even while doing my medicines. Also, they don't have to be hung, and there is no annoying IV pole to drag around. The only downside to home healthcare that I've experienced is that they are usually not as good at sticking me as the people in the hospital. I have really really tiny veins, and very few of those, so I I used to get stuck a LOT by home healthcare nurses. I have a portacath now, so that has cut down on the sticks a lot. But anyway, I guess that's about it, feel free to ask me any questions because I have definitely had a lot of experience with home healthcare!~Jenny
Hi,My daughter is four with CF. She hasn't needed to be hospitalized or get IV meds in a while (over 2 yrs) but we have done both. Her first time she needed them we stayed in the hospital for 14 days on IV meds and came home on an oral antibiotic. The other 3 times that she was in for infections we did 7-10 days in and then home for 7 days on the home IV. It is really a trade off. Yes, I had to get up at all hours of the night and morning but it was a relief to be home since I stay with her in the hospital and she cried a lot in there that she wanted to go home. She hasn't ever done home IV without going in first and she always gets a picc line. The hospital won't even let her come home on home IV without a picc, but I don't know what they do elsewhere. Maybe you can have her admitted for a few days and then go home on home IV's? That way they can place a picc and start her on the antibiotics, get her levels adjusted and whatnot. Was the last round of IV in the hospital or at home?No bronch,so I don't know how that goes.Hope I've helped,Andrea
Hi Andrea, thanks for the response. The last time we did 14 days in the hopspital and 7 days at home. We live 5 hrs. away from the hospital. I also stay at the hospital full time with her. Her i.v.'s go bad pretty fast. We had a picc also and that went bad right at 21 days. If not they may have kept her on the picc longer.
Hi,Rachel "blows' her lines quick but we never had a problem with the picc once it was placed (except for her pulling it out she has had 7 picc lines for 4 flare ups, now they stitch it in.) That has got to be hard to be so far away from your hospital and clinic. We are about 30 min away from the Children's Hospital of Philadelphia, so I can't imagine being that far from home with a sick little one. I am able to have help when my daughter is "in". My mother-in-law will come and keep an eye on her while I go hop on the train and go pick up stuff at home for Rachel. My hubby is able to come almost every night after work to have dinner with us. I know how hard it is to be "in" with all that help it is still difficult. Do you think that she does better when she stays in for the full course of antibiotics? Is it harder on you to be in or home? When you are home you also have the rest of the family to care for but at least you can sleep (sort of) in your own bed.......good luck to you and keep us posted. If you kneed support there are 2 really good sites I have found http://groups.msn.com/cysticfibrosis2chat and the yahoo group called cfparents (can't remember the addy) everyone at these sites are very helpful and nice.Andrea
Hi Jenny, thank you for your input. Do you use a pump when you are at home? When my daughter came home last time she had a punp which automatically dosed every 6 hrs. and kept a very small flow continually. She also had another syringe pump for the every 8 hr med. The home health care nurse came once to set things up and then wasn't going to come back unless I called. I had her come the next day to make sure I changed everything corectly. I thought they would come once a day to check for infections and whatnot. How often do your nurses come? We bought her a cute little backpack to wear the pump in. It was so heavy the neck strap they gave us was cutting into her neck. Also I have a very bad cough right now and think that this would not be good around the i.v. and everything else. Thanks again, Michelle p.s. have you ever had a bronchoscopy? <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi Michelle,I did have a pump one time, and while it was better than an IV pole and drip bag, I still didn't like it as much as the Intermate containers. Even though I had to wake up every 6 hours to start and stop my meds, they allow so much mobility, and the only time you are hooked up is while you are actually doing the meds. I'll try and find a website that can maybe explain them a little better than I have. Also, my nurses only came out if I had a problem, if I needed bloodwork done, or if it was time to change the IV dressing. We've done home IV's so many times now that my mom and I sometimes know how to do everything better than the nurses!!! I have had a bronchoscopy, but I barely remember it. I guess I was about 10 or 11. All I remember is them putting me to sleep, and then waking up in my hopstial room and recovering for a couple of days. I didn't have any complications or negative reactions to it though. If you have any specific questions, I'd be glad to ask my mom, I'm sure she remembers more of it than I do!~Jenny
Hey-I did a google search, and I didn't find a great description of it, but here's a short paragraph I copied from the Cystic-L Handbook about the Intermate Infusion System:"There are also non-mechanical means of drug delivery such as the Baxter Intermate system in which the med is injected via pressure. A small elastic-type "balloon" holds the med in a small bottle (which resembles a baby bottle). One PWCF reports: "Either system is extremely convenient, especially if like me you often IV-on-the-go"."You can see a picture of it here: the medicine is inside the bubble in the "bottle," and the bubble gets smaller and smaller until is gone (which is how you know the medicine is done). http://www.opitsourcebook.com/baxter.html#anchor965371~Jenny 20 w/cf <img src="i/expressions/face-icon-small-happy.gif" border="0">
Thanks again! Carly's sputum results came back today with only staph. She seems to always have staph. Monday the doc. will call and we will discuss the next step. They think there is pseudomonas and it's not showing up. She had it when she was 3 and hasn't cultured it since, but the pft's make them think it's back. Take care, Michelle<img src="i/expressions/face-icon-small-confused.gif" border="0">