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Info on Tune Ups PLease
- Thread starter anonymous
- Start date
Mockingbird
New member
I think my first tune up was around the age of twelve or thirteen, but I think a lot of people have them earlier than that. It really depend on the person. Anyway, they give us IV medsand do nebulizers/CPT three or four times a day. I guess a lot of hospitals like to do the vest now, but I was always allowed to do my own thing. I think that's about it, except they are sure to give high-calorie meals and lots of snacks. Children's hospitals usually have some kind of activities director or something to keep the kids active. =-) Then, after about two weeks, they'll test PFT's again and if they've improved they will send you on your way. =-)
Jarod
22 w/cf
Jarod
22 w/cf
Emily65Roses
New member
I didn't have my first until I was 16, though yes, for some they start much earlier. They'll put you on IV antibiotics for a two-week stint. I usually only stay 4 or 5 days max, and then do the rest of my IV meds at home through a home nursing company. While you're in there, they do your nebs regularly, and physical therapy. At my hospital, they do the physical therapy of your choice, so I always just have therapists come in and beat my back. It's the one I prefer. They also tend to draw blood for levels on the antibiotics, etc. Sometimes they do it more than once, but I haven't kept count, because the needles don't bother me like they used to. Usually only once or twice, though, I think.
Like Emily and Jarod have said a tune-up is usually a two week stint at the hospital. Samantha had her first at about 15 months. They usually put in a Picc line in the first few days there so that they don't have to continuously poke you with needles. All blood drawn can go through the picc line.
The day consists of CPT (chest therapy) every four hours, nebs about four times a day and vitals every four hours. It's hard to get any rest for the patient or the parent! We chose to do the second round of IV's (about six months later) mostly at home. Its a difficult adjustment at first, but it is much more relaxing to be at home. Plus you don't have to worry about catching some new "bug" at the hospital. (This happened to Samantha. At the end of the two week stay when she was much better, she suddenly came down with rotavirus. Guess what the patient next door had? Rotavirus, of course!) Don't be afraid to insist on people washing their hands when they walk in.
Good luck!
Maria (mother of three daughters, the youngest Samantha w/cf)
The day consists of CPT (chest therapy) every four hours, nebs about four times a day and vitals every four hours. It's hard to get any rest for the patient or the parent! We chose to do the second round of IV's (about six months later) mostly at home. Its a difficult adjustment at first, but it is much more relaxing to be at home. Plus you don't have to worry about catching some new "bug" at the hospital. (This happened to Samantha. At the end of the two week stay when she was much better, she suddenly came down with rotavirus. Guess what the patient next door had? Rotavirus, of course!) Don't be afraid to insist on people washing their hands when they walk in.
Good luck!
Maria (mother of three daughters, the youngest Samantha w/cf)
Magerly111
New member
Every case is different and so is every hospital. I've always been told that no one knows me because I'm rarely in there, but after the first time I was in (when I was 16), I seem to have been in almost every summer after that. I stayed two weeks the first time, the second time I decided to stay in for a week, and then go home, but I wound up on IV's for over a month! So the last time I went in, I just stayed the full two weeks, and was out after that. When I did my IV's at home, it was up to me to do everything on my own. I had to wake up and stay up late to administer them, and after the first few days, I got really tired of it, and I personally thought that the hospital did things more efficiently. Plus I was going to work the weeks I was home, and I don't think that helped much.
But anyway, like everyone else said, when you're in there, they do all the nebs about 4 times a day, IV meds, chest pt, and physical therapy on some days. There are some people that try to get you to join in fun activities, but at my hospital, we are bound to our rooms and can't leave unless it's for PFT's or X-rays. After the first week they check your PFTs and X-rays to see if you've improved, and the second week they do the same thing. If you're pretty much better, they let you go.
But anyway, like everyone else said, when you're in there, they do all the nebs about 4 times a day, IV meds, chest pt, and physical therapy on some days. There are some people that try to get you to join in fun activities, but at my hospital, we are bound to our rooms and can't leave unless it's for PFT's or X-rays. After the first week they check your PFTs and X-rays to see if you've improved, and the second week they do the same thing. If you're pretty much better, they let you go.
NoDayButToday
New member
I had my first tune up at 5. Mine too consist of what everyone else mentioned, though I did not get a PICC until a hospitalization when I was 8, when my veins got worse. My hospital is pretty good about having fun events. I was in around the holidays (though not for Christmas, I got out just before) and they had a lot of holiday related events (also, for Hannukah, which did fall while I was in, they had services for Jewish patients etc.)
K
Kaitsmom
Guest
I can normally tell when kait needs antibiotics, normally she sounds like she is having more difficult time breathing, coughs alot more (normally not much of a cough), is not as energetic and complains of headaches,she goes in for a couple of days and comes home with a PICC line and then home we go. I think that she would much rather be at home, she gets too bored in the hospital and misses her siblings. Kait is only 8 years old and has only had a PICC 3 times , when she was 2 and 6 and now at 8 years .
Thanks
kaitsmom<img src="i/expressions/rose.gif" border="0">
Thanks
kaitsmom<img src="i/expressions/rose.gif" border="0">
supermanfan
New member
Funny you should ask such a thing. When I was diagnosed at age 7 my doctor insisted that I go to the hospital for two weeks out of every year. Of course my parents being frightened that I could die, they addmitted me without a thought. I did hate it though. But as I started getting older I was always very healthy, and able to do many things.
I use to go to camp, and one of the doctors there asked my mom why she had me in the hospital every year. He didnt' believe in Tune-Ups, but my mom said because it helped my lungs stay clean... He later began working with the doctor that originally diagnosed me. ~ Funny
The tune ups are full of rigorus thearopy, much more than what one would get at home unless you were loaded with money, and able to buy all the equipment. My parents certainly weren't.
I have looked back now, and thank goodness I had such a doctor and parents to care. So many people that I knew have died because they weren't kept as healthy as I was. If you are a parent thinking that it is not necessary, please think again. Your child will thank you for it when they get older.
I use to go to camp, and one of the doctors there asked my mom why she had me in the hospital every year. He didnt' believe in Tune-Ups, but my mom said because it helped my lungs stay clean... He later began working with the doctor that originally diagnosed me. ~ Funny
The tune ups are full of rigorus thearopy, much more than what one would get at home unless you were loaded with money, and able to buy all the equipment. My parents certainly weren't.
I have looked back now, and thank goodness I had such a doctor and parents to care. So many people that I knew have died because they weren't kept as healthy as I was. If you are a parent thinking that it is not necessary, please think again. Your child will thank you for it when they get older.
thelizardqueen
New member
I'm not sure if I agree with the fact that tuneups are necessary to stay healthy and live longer. I've never been for a tuneup and I'm perfectly healthy. My docs don't believe in tuneups, and I'm glad that I'm not on IV all the time. This means that I won't build up aa immunity to meds that will help me later on in life when I really need them. I've been on IV once in my life and that was 10 years ago. I have mild CF, and don't have very much long involvement compared to some. I have a doctor and parents that care, but I don't go into hospital every year when I don't need to, and I'm old and healthy. <img src="i/expressions/face-icon-small-smile.gif" border="0">
thelizardqueen
New member
I'm not sure if I agree with the fact that tuneups are necessary to stay healthy and live longer. I've never been for a tuneup and I'm perfectly healthy. My docs don't believe in tuneups, and I'm glad that I'm not on IV all the time. This means that I won't build up aa immunity to meds that will help me later on in life when I really need them. I've been on IV once in my life and that was 10 years ago. I have mild CF, and don't have very much long involvement compared to some. I have a doctor and parents that care, but I don't go into hospital every year when I don't need to, and I'm old and healthy. <img src="i/expressions/face-icon-small-smile.gif" border="0">
thelizardqueen
New member
Charlotte - I'm not sure about that. I have a check up on thursday, so I will try to find that out for you, as I'm curious myself. I know I have been tested, but I don't know myself what mutation it is. I'll get back to you though.
thelizardqueen
New member
Charlotte - I'm not sure about that. I have a check up on thursday, so I will try to find that out for you, as I'm curious myself. I know I have been tested, but I don't know myself what mutation it is. I'll get back to you though.