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Thread: First Hospitalization

  1. #1
    Junior Member
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    First Hospitalization

    My 16 yr old goes in today for his first ever "tune-up". None of us know what to expect. We were (he still is) in a state of shock as to the abruptness of it all but his PFTs are done to 58% after being 103 last Nov. What should we expect for the next 14 days?

  2. #2
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    If it's like my visits, the first day or two is an onslaught of blood work, chest xrays, and other tests. This is followed by 12-13 days of sitting in a bed getting antibiotics watching reruns on television. Bring things to do.

  3. #3
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    Quote Originally Posted by Oboe View Post
    If it's like my visits, the first day or two is an onslaught of blood work, chest xrays, and other tests. This is followed by 12-13 days of sitting in a bed getting antibiotics watching reruns on television. Bring things to do.
    Not quite thru second day yet and you are correct. He has been under onslaught of IVs, treatments, blood draws, etc. and it is weekend. Did you not want to get out of bed first few days because of toll on body? Does some energy level start coming back as body gets used to so much antibiotic? So far, appetite is great. Did you start losing your appetite at all?

  4. #4
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    Result of First Hospitalization

    Sorry to have been away so long, but the 14 day "tune-up" is done! Some ups and some downs but there were some silver linings! His PFTs came up from 58 to 93. Dr would have liked to have kept him for another 4 days but in his words "I shot myself in the foot building him up to go home. If I were to tell him he had to stay longer, it would probably do more harm than good." So, he came home and we are trying to keep up with a similar regime as in hospital, just not as many times per day. He did say he could get a deeper breath and vest was worth it (huge!). He also got some good psychiatric help (silver lining) and unloaded a lot of what was swirling in his head (silver lining). It was long and hard on all of us but on the whole, it was good.

  5. #5
    Senior Member
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    Know it is possible for them to come up - mine were down to 57% in February 2012 and now at 95% a few weeks ago - even ON IVs. I believe diet and nutrition are the key to my success as a 26 year old.

    findingtruth1.blogspot.com

    This is a blog I write about my CF with nutrition, exercise, and just my life experience.

    I liked being in the hospital my first time as opposed to my second time (just a few weeks ago when I went to hospital for a PICC and sent home for 10 days worth of IV antibiotics) because I got rest. I didn't have to work and I just got everyone to cater to my needs of sleep, sleep, and eating. But glad to hear he is home and got some psych help. I, too, have needed that as a 23 year old, I finally admitted that I was depressed and very anxious and have been doing counseling for the past few years and medications have helped too. It's scary having this disease, especially on your first hospital stay. You never know what to expect, but I am glad he is doing well.. Take care.

  6. #6
    Cale Gilley
    Guest
    The most important thing I want to say to you is don't let him lie to you about doing his treatments, that vest will save his life. Putting the vest on and sitting there isn't going to cut it he has to take the breaks in-between cycles to cough because the vest loosens the phlegm you have to work it up. Don't let him sit around all day every day either exercise is so good for the lungs cardio. I didn't take care of myself and lied to my mom about my treatments I can't blame her for not baby sitting me and making sure I did them no one told her how important it was, but I'm telling you and he will thank you one day. I hope i don't come off too harsh I just wanna help people not end up on the wrong side of the fence. Good luck and take care.

  7. #7
    Also, the next time you end up going in for a tune-up, please make sure your kid gets up and moves about during the day. walk the halls, ask about an exercise bike, other things to keep his body moving. It will help spirits and attitude, but also helps the lung functions rise and reduces danger of blood clots. So glad it was a good stay overall and had amazing results on getting the lung function back up. Remember it really REALLY does matter how and when your son does his treatments, Cale Gilley is right, just putting the vest on and sleeping through it (my son is a teenager, so I've been there, done that too) WON'T do much good. He has to be sitting up, actively trying to cough at 5 min intervals (or whatever your cf team says) and it will make a BIG difference on maintaining that lung function and health and keeping the hospital stays to a minimum. Good luck!
    Mother of Joe, 15 yrs old with DDF508, prediabetes, sinusitis, just diagnosed with mycobacterium abscessus, diagnosed with CF at 2.5 months old, treated at KU Med Center in KC, KS.

  8. #8
    Do they usually make you stay in the hospital the entire time? My husband is going for his first IV antibiotics and they were telling him it would be 3-4 days in the hospital and then 2 weeks at home with the IV's. Is that unusual? It kind of helps our days if he were home to put the kids on the bus since I go to work incredibly early.

  9. #9
    Super Moderator
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    I think that's fairly common now ...they have to do in hospital first I think to get the antibiotic levels right before releasing from home....also maybe check out the recent thread re eclipse balls or something that makes home antibiotics easier. And thanks for note,..more later...
    Quote Originally Posted by Pebbles8 View Post
    Do they usually make you stay in the hospital the entire time? My husband is going for his fairst IV antibiotics and they were telling him it would be 3-4 days in the hospital and then 2 weeks at home with the IV's. Is that unusual? It kind of helps our days if he were home to put the kids on the bus since I go to work incredibly early.

  10. #10
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    Quote Originally Posted by Pebbles8 View Post
    Do they usually make you stay in the hospital the entire time? My husband is going for his first IV antibiotics and they were telling him it would be 3-4 days in the hospital and then 2 weeks at home with the IV's. Is that unusual? It kind of helps our days if he were home to put the kids on the bus since I go to work incredibly early.
    Hi Pebbles,

    I think that is pretty common. I used to always start out in the hospital the first few days (3 or 4), and then head home on IVs. Depending on how "sick" I was, it was sometimes longer (like when needing bronchs or having my port placed etc) Since having my daughter, however, my doctors have been on board to let me do them all at home. I go in and get my PICC and the meds are delivered to my house.

    The reason they gave for having me come in for the first few days was to monitor Tobra levels, make sure I was getting 4x daily treatments, and wanted to start seeing some improvement in PFTs before sending me home. I'm wondering if the doctors are feeling that since this will be his first time ever on IVs it would be good to make sure he doesn't have any reaction to the meds, and also get the hang of the IVs before being on his own doing it. The home health nurses can always give a crash course on doing the IVs at home, but the first couple times were overwhelming for me, even after just getting out the hospital where I had been watching the nurses do it.

    I completely understand wanting to do it at home since you have children. As I mentioned, that is exactly why my doc is more flexible with me now. If they would let him do it all at home I'd be sure to tell the nurse you need VERY thorough education and demonstration. I do think it may be in his best interest just this once to go in for at least a couple days. I think you and he both may be very overwhelmed with the PICC care, IV meds, flushing, tubing, etc if you don't have any prior experience. That is completely my opinion though, so do what you what with it.

    Let us know if you have any other questions and hope you get some more feedback. Hope your hubby is feeling better soon!


    Autumn 34 w/cf

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