home IV vs in hospital IV

[Liza]

I wasn't sure if I should ask this here or in Young Adult. First of all, my oldest (17) was just put in for IV on Monday.

She has a port, that was placed two years ago. It was placed and left accessed for immediate use. As some of you may remember, she was not a happy person when it was all said and done. I posted her asking for help on that. It wasn't put where it was supposed to be, it protuded too much (More than they said it would) etc. She finally got her pediatrician to get her a second opinion at Childrens and got it moved. Happy person now. Fast forward. She hasn't had to use it since, for CF anyway. They used it when she had some kidney stones last year, but no long term use. Anyhow. Despite getting the flu shot, she came down with the flu after her sister got it. She recovered fairly quickly (the younger one) Anna however did not. So a week later she's still feeling ill, no fevers just not back up to par, and no school. So my husband took her in Monday and they admitted her, PFT's down to 38. Fine she said, but she wanted to go home on IV later in the week. Today they said "no", her PFTs weren't up enough. Anna doesn't do any extra school activities. She does however participate in Model UN. Which is this weekend. It's a once a year thing. First let me say, they did not have a bed for her at her regular hospital so she opted for the children's hospital and the doc she currently has was just recently added to the CF team but I don't believe works with CF patients all the time. Don't exactly know all the details there. Some type of merger between Children's "CF docs" and the University CF Center (where we go). So needless to say, she is royally pissed. She wants to leave. She doesn't want to miss Model UN which runs from Friday evening to Sunday afternoon. Not an over night thing just a whole weekend thing.

Why would they put her on home IV without even being in the hospital (that time she had her port put in was only a day thing) and now not let her go home after being there 4 days? Do you think it's just the doctor? She usually only sees one of the team doctors, because she prefers him to the other one. Should we call them and ask? Not to mention she's been in isolation because that's the way they do it there at Children's. They said until they found out if she had influenza a or b. Well she was already better the day they put her in. If she'd a been feeling that way on Sunday we probably would have never took her in on Monday.

Anyone have any ideas as to why they would put her on home IV from the start one time and two years later make her be in the hospital for a week first? My husband says we have to go with what the current doc says but I keep thinking, this is her senior year, this is the one few things she's been looking forward to. And I"m with her, I can't see the reasoning behind it. Yes, she should be on IV, we both know that but why not at home so she can participate in Model UN. Am I too thinking like a teen and not a Mom?

Thanks to anyone that can help me out.

Liza
(mom of 2teen girls w/CF)

 

[Emily65Roses]

Somestimes they have a reason to keep you in, even if you've gone on home IV after just a day in previous times. For me, it's whenever I start a new med. They make me stay a few days, so they can monitor how I react to it. Ask them specifically, what the reason is. If it's just because her numbers aren't up, that doesn't seem reasonable to me. But then again, I don't know her particular case or how high/low her numbers are. I'd say ask the doctor specifically. And if you want the opinion of a regular doctor, absolutely call and ask. There's no harm in asking. Not to mention, yes, she needs to take care of her CF, but you're right, she also needs to be a teenager. She needs to enjoy her senior year. If they have a VALID reason to keep her in, then there's not much you can do about it. But if it's just because her numbers aren't up yet (unless there are underlying circumstances), I'd say hell no, get out of there. My numbers don't go up in the first week, it always takes the whole two weeks of IVs for them to go up.

And just for the record, I think you're in a good balance of thinking between teenager and mom. You need to think like her mom, obviously, but thinking like a teenager also helps you maintain an understanding for what's important to her. It's hard to balance life with CF and life outside it, because you can never really get outside the CF. But you need to find a balance where you're taking care of the CF and still allowing for a life. So I just wanted to share, that in my opinion, your thinking processes sound very balanced and fair to me. But either way... check with the doctor, find out if there's a real underlying reason. If it doesn't seem like there is, contact the other doctor and ask their opinion. <img src="i/expressions/rose.gif" border="0">

 

[jenhum]

I would definitely get a second opinion and ask for specific reasons why she can't leave for this. CF docs are ususally the best about understanding that even though we are sick, we have to live our lives. Explain to the doc how important this is to her and make them understand that unless it will severely damage her health, she wants out for the weekend.

I know that if this had happened when I was her age, I would have tried to hide the fact that I was getting sick the next time around.

 

[Liza]

Thanks you guys. Anna's PFT's went from about 56 to 38, and then when they tested her on Thursday (3days later) it was up one pt to 39.

Two weeks ago when Rachel came down with the flu, then had her PFT's done the next week they decided to put Anna on Tamaflu (antiviral) because she was already having the fevers and headaches. So she finished the antiviral like on Saturday, she actually felt better and we went to see Man of the House. Sunday she was feeling bad again, no fever just headache and tired. Monday AM, she wasn't quite up to school and a call into clinic said to bring her in. That was about 9 or 10. By the time I saw her at 5 she was perky and feeling good. IV's hadn't been started yet. And she's been good ever since.

My husband says, and I tend to agree. We tried letting her be and not telling her to do her treatments but that only lasted about 6 months. Most of the time she was compliant. Here lately, she'd skip treatments saying she'd done them. I know how much medicine is in the the cabinet and fridge. I re-order it. Strange how I refill the Pulmozyme for both girls at the same time both at zero ampules and Rachel always seems to finish hers and Anna's still got two bags left. So his response to her wanting to go home was her not doing her treatments properly in the first place, what makes us think that she will on home IV? We've gone back to getting up in the AM and doing her percussion. She'll get her treatment in the the AM but no CPT. Whether it be percussion or flutter. I understand that when she goes off to college she'll be entirely on her own but I also understand that if she thinks anything like I did when I went off to college, she won't schedule a class to start before 10AM. Right now she gets up at 6am. I'm hoping or fooling myself, into thinking that when she doesn't have to be in class by 8am she'll get up and get things done properly. No, she doesn't get up early on the weekend. Her AM treatment starts about noon. Maybe.

Part of her arguement, she doesn't eat well in the hospital, she gets no exercise (because she's in isolation she can't leave her room, "what am I gonna do walk around in circles in my room?") And she's bored to death. She argues she wants to live what life she has. Our arguement is that we also want her to live, but to live longer by doing her treatments.

I don't know, I just want to yank my hair out!

I guess part of it is that her Tobra levels aren't where they should be yet. The cultures aren't back yet. I don't really know what's taking so long. They took them Monday. I don't recall it ever taking this long before. I guess we'll see what the day brings.

Thanks again for your input. Time to get to the hospital.

Liza
(mom of 2teen girls w/CF)

 

[thefrogprincess]

First off, does everyone in your home get a flu shot? If not they should, even people who aren't high risk themselves but live with a person who is should be a priority for a shot.

Now, has her PFTs aver been that low before? If not that could be why they kept her. Also, since the flu is a virus not bacteria she could get worse before getting better so maybe they wanted to be able to keep a close eye on her. As far as model UN, that's great that she takes part, but if she's sick and goes to this thing for the weekend she's going to infect other people.

Bottom line though, if something is fishy to you ask the docs. If you don't like the answers get a second third or hundreth opinion if you want it.

 

[anonymous]

My husband has had a port for a couple of years. He gets home iv's for 3 weeks about every 6-8 weeks. I know we would be upset if they opted for admitting him over home therapy. Continuing his normal life is so important. The only reason I can see him getting admitted is if his iv's at home weren't effective. We work hard at making sure anything they'd be doing for him at the hospital (other than rest - and most times you don't get to rest at a hospital anyway) is done at home. That way, home is the best place - less exposure to germs & good mental attitude.

Once he had a flare up, and his CF dr's in Indy prescribed home iv's, then at the same time he had a bowel obstruction, so he was admitted locally. The local pulmonary 'expert' was put on his case because he was the only one that could prescribe the antibiotics we told our family doc he should be on. I pitched a fit when they kept him for days (his obstruction problem diffused) and they had him on other antibiotics. The one's the CF dr. prescribed, tested for sensitivity & synergy, were sitting in my refrigerator at home. When I asked our family dr. what was up, he said he thought the pulmonary doc really didn't have that much exposure to adult CF'ers (he's 45) or his germs (pseudonomas, cepacia, stenotrophomonas) and he probably just wanted to study him. I said, 'too bad,' check him out now. (I said it nicely).

I wish you well, and wisdom & courage to help your daughter stay well and live a full life. You sound like a great Mom. Hope your situation works out, and she realizes how important it is to take care of herself the best she can, and the doctors see home therapy is her best bet! For us, even though it's exhausting, home therapy wins hands down over hospitals.

 

[anonymous]

Hi this is Kathy, Coll's mom. I used to prefer home IVs but we recently switched to a new CF center which has a fantastic children's hospital (great nurses, rooms, etc.) - it really has all the comforts of home. Plus it seems like friends are more likely to visit you in the hospital than when you're just at home sick. Anyway, I'm at work, but my point is that a really good hospital can seem homey and not be so terrible.

Have a good day! Kathy

 

[NoDayButToday]

Indeed Mom-- 21 days went by slowly, but I wasn't really miserable that whole time. I was only clamoring to get out the last couple of days. It was very pleasant... full bathrooms, cable, movies on demand, internet access, a full bed for my mom. They basically have ALL single rooms there too.

 

[vickysmommy]

Every time I get sick my doctor gives me a choice on whether I want Home IVs or hospital. When I get Home IVs I have a nurse come out everyday too, it's called Home health, I love it.

 

[Liza]

Thanks you guys. Anna was able to come home on Friday late afterall. She asked to do another PFT and she was up to 45 from 39 the day before. So he let her go home on home IV. She was about an hour late for model UN but she had a blast. She had to miss about an hour of it in the afternoon on Sat. because she had to come home to do her IV but she was fine with that.

She's been doing great. She had PFT's yesterday and is up some more to 56.9! She was back at school yesterday shuffling around her classes because she has to come home at 1:30 to do her afternoon IV. He's got her on 3 times a day and won't budge on that. Oh well, that's fine. Fingers crossed that he appt. on Thursday goes well. We still have no idea how long her treatment is expected. I'm sure at least another week.

Her main issue with staying in hospital is missing class. She missed so much her sophomore year from being in hospital that she lost two credits. No room to lose anymore now. She has to have 4yrs of math to fullfill her acceptance to UNL. Anyone out there know the secret to Trig? Math is her biggest challenge. She ended up having to drop accounting just so she could shuffle her Trig class to an hour where she wouldn't miss it when she heads home. Her teachers are great at helping to shuffle things around so that she can get all the help she can with Trig. If she fails it then she'll have to go to UTSA. (University of Texas San Antonio). Summer school is out of the question because we're moving in June. (Thank you Uncle Sam, we're headed HOME!) This was her first time at Children's here in NE. She was in isolation (even though her flu symptoms were gone and she hadn't run a fever in two days), the child life people didn't come in until like the third day, no one from the school (hospital learning area) came in ever (even though school work was written down as a priority). It was just different than what we'd ever experienced. We've been to clinic both in children's hospitals and university hospitals. It was a nice new shiney bright big hospital with great rooms but she's decided she likes her older university hospital better. Familiarity, I'm sure.

They have her on Azytranam (sp), that's how it sounds. Have any of you ever been on it? They changed her from Sephapem (sp) the day they decided to go ahead and release her. That's the one that's making her have an afternoon IV, they say every 8hrs for best results. And she's also on Tobra which seems to be pretty regular.

Thanks again for all your help and thoughts.
Liza
(Mom of 2teen girls w/CF)