Search results

  1. T

    When to get a PORT

    Well we're in again and we decided to do the PORT this time. She is really loving it. She has been very sore but she said that it is worth it.
  2. T

    Flu type A Day 2

    Well she woke up Sunday with a fever 103.5 so we went to the ER. She has the flu and she was already getting ill with low grade fevers and a cough and her CF appointment was going to be today... She had a PORT placed yesterday. She keeps having severe fevers and is exhausted. Will most likely...
  3. T

    Getting cut with opening Cayston

    It happens all the time if your not careful......when Whitney was in the hospital in December she was on Caston so we took the rest with us to use in the hospital and we had to teach the respiratory therapist on how to use the system and how to mix it and open it and that was one of the key...
  4. T

    Medication reaction

    We went to Deaconess Gateway here in Evansville IN. We were told by her doctors and many nurses and clinic staff that they have done many CF children here in this hospital and really wanted to be close to home for her. She gets so severely upset and withdrawn when she is admitted and not many...
  5. T

    When to get a PORT

    When do you decide to get a port? What is the deciding factor? This is her 3 rd hospital stay in 9 months. What are the pros & cons of a port for a cf-fer?
  6. T

    Medication reaction

    Well we are back in for her 3 rd hospital stay in 9 months we have been here since Dec 13th. This has not been a good year for her. This go around we stayed closer to home since it was Christmas and we wanted to see if they are able to care for a CF patient because we have heard from our clinic...
  7. T

    how well does cayston work for you?

    My 10 year old has been taking it for a year and a half....she has been getting worse on it...also the machine gives out within that time frame and no insurance will pay for another one...they do have a 2 year warrenty on them but I wouldnt be buying one if this one breaks...they cost $895 and...
  8. T

    Cayston in the Hospital

    Our hospital does not supply Cayston either....They said the same that its not needed while their on the IV antibiotics and when the machine does go out, which is usually at about a year and a half. If you want another its $900. When you start Cayston they send the machine free with the first...
  9. T

    Signs of decline?

    What signs do you all see as declines in your childs health to know if its just a normal bug or virus to know if its the start of permanent damage or decline? This year has been so rough on her, she is 10 and had been doing really good for so long and last year she started to get on antibiotics...
  10. T


    She is 10...but started growing Pseudo very young and by 5 they said that she was colonized with it, but the cultures they got deep in her lungs say only MRSA this go around, this was from a bronch done...I have noticed this trend before on her, if she went swimming then she grew pseudo and no...
  11. T


    Our daughter has grown mRSA for years now. This time she was very tired and had a constant cough but could not get anything up also kept a low fever at all times. Her lung functions were not too bad and she actually didn't sound to bad they said.. but the doctor's still wanted to admit her...
  12. T


    I was shocked that our kiddo was not growing Pseudomonas this time around after growing it for years. This go around she was only growing MRSA and they did a Bronch on her to and still no Pseudomonas...what's the difference? no swimming....we owned a pool and we moved and we had suspected the...
  13. T


    When did you all develop CFRD? Our Whitney has been having difficulties with her sugar the past 2 years and they said that she was pre-diabetic. We seen the Endo doc about 7-8 months ago and her A1C was 5.9 so we thought great she is fine for now but now she is at 7. This is her second tune...
  14. T

    Cystic Fibrosis and Hypotonia

    Anyone out there with these two together? Our 10 yr old has both of these and wondered if there is any studies on this or recommendations & if we should do her cpt treatments different.
  15. T

    What is considered disease progression?

    Hospital PICC line: Cefapime runs 4 hrs, Benedryle for Vanc, then Tobramycin runs 30 mins, then Vanc runs 2 hours then all rotate every 8 hours, then all her normal home meds Albuterol 4 day daily, Pulmozyme in am, Hypertonic 7% 4 times daily, Creon 24,000 2 with breakfast, lunch & snacks & 3...
  16. T

    Ban R nebs

    2 types of these nebs Thanks for the info. There is 2 different types one that only last 7 days and then the one that last 6 months. :)
  17. T

    2013 tune #2

    Thank you so much :o
  18. T

    Ban R nebs

    Anyone using these nebs for their kiddos? Can you put them into a baby bottle sterilizer?
  19. T

    What is considered disease progression?

    Just wondering what is considered disease progression. This past year she has had to go to doing four vest treatments daily due to congestion and she was in the hospital last March and now again but this time she is severely congested and she had a endoscopy done and they expressed about how...
  20. T

    2013 tune #2

    Results of Bronch or Endoscopy with lavage Just and update. Her fever has stayed down and doing pretty good but her endoscopy showed severe mucus and they repeated stating that several times. We were doing 4 treatments daily with her Albuterol but still very congested. They added the...