Here’s the Deal-e-o

Nicholas’ doctor has decided the best thing to do is to stop his IV antibiotics.  Today marks the end of three weeks, which is how long normal IV therapy lasts.  They are going to repeat his lung function today to see what the final number will be and we are going to go home sometime today. 

We have alot to do before we leave because when we go home, Nicholas will be on a new drug.  This drug has not yet been approved by the FDA.  It is called Aztreonam Lisine for Inhalation – AZLI for short.  They have permission to use it in clinical trials and NIcholas’ doctor is the head of this trial.  He recieved a grant to be able to use it here.  It will be an antibiotic that is given through a breathing treatment and has to be done in addition to the breathing treatments he already does.  He does it for a month, stops for a month, on for a month and so on.  They are very encouraged by the early results of the antibiotic.  Nicholas is allergic to so many drugs that anything we can use will be a Godsend.  Hopefully, it will help to cut down on the amount of hospital visits we have to have each year as well.  They have to give him his first dose here before we can leave to make sure he’s not going to react to it. 

We are thankful that we are going home and we are praying for good numbers from the lung function test and no reaction to the new drug.   We should be home sometime tonight. 🙂


4 Responses to “Here’s the Deal-e-o”

  1. jason Says:

    great phonetics.

  2. Katey Ballard Says:

    I did the Aztreonam study for awhile and then I stopped it do to side effects and other stuff going on…but our CF center has done a lot of testing and trials with it, and I know of a lot of people who it has helped tremendously and has cut down on hospital stays. Will he use the eflow neb machine with it? That’s the best nebulizer machine ever invented. I hope it works for him. Good luck with it!

  3. Tracy Says:

    I hope he blows good today!
    Also this new drug sounds exciting, I hope he has no reactions to it or anything. I’m so ready for something, anything to come out to help these kids! I always get so excited anytime I hear of anything new.
    Right now Molly alternates between the Tobi and Colistin, one month on Tobi, one on Colistin and so on. Really though it’s hard for me to notice if either are doing anything or if one is better than another really. She does seem to cough more on Tobi, not sure if that’s good or bad. Is she coughing because it isn’t working, or is she coughing because it’s breaking stuff up in her lungs. We have this discussion alot with her docs, for now we’re keeping her on it.
    Y’all have a safe trip home ..

  4. Sandy Howard Says:

    I’m thrilled for you all – coming home, the new medicine, etc. PRAISE GOD!

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