Hi all,
Once again I am writing to let those of you who encouraged me to follow my instincts know, that I was right! Thank you for the encouragement.
We had gone for well over a year and had to have a tune-up every 3-4 months with no explanations. They could not really find anything wrong with Nathan other than the usually staph and aspergillus that he had grown several times but I knew they were missing something.
Finally, in October, we did an induced sputum after taking him off all antibiotics for a week and he grew strenotrophomonas and pseduomonas for the first time, which I had already reported to you all.
But guess what? That was not all he grew! It took a few more weeks to grow but he also grew mycobacterium abscessus.
This is not to say that I wanted to be right, but my instincts were right. I was starting to doubt myself when I wrote about my frustration and was encouraged to keep following and trusting my instincts and it paid off. I just hope that all new CF moms will read this and know from mine and others experience to follow their instincts and continue to be persistant when they just know that something is being missed. At least until there is concrete proof that the instinct is wrong.
I never knew that there were so many things growing in those lungs, I expected one maybe two new bugs but never anticipated the three, and one really big one. With some answers now we can move forward and hopefully use a better treatment plan that will finally allow us to get out of this rut that we have been in. Though, it may take some time to get there but agian, at least now we know what we are up against.
Thanks again to all who encouraged me not to give up on my instincts!
Patty
Nathan (CF, 14)
Once again I am writing to let those of you who encouraged me to follow my instincts know, that I was right! Thank you for the encouragement.
We had gone for well over a year and had to have a tune-up every 3-4 months with no explanations. They could not really find anything wrong with Nathan other than the usually staph and aspergillus that he had grown several times but I knew they were missing something.
Finally, in October, we did an induced sputum after taking him off all antibiotics for a week and he grew strenotrophomonas and pseduomonas for the first time, which I had already reported to you all.
But guess what? That was not all he grew! It took a few more weeks to grow but he also grew mycobacterium abscessus.
This is not to say that I wanted to be right, but my instincts were right. I was starting to doubt myself when I wrote about my frustration and was encouraged to keep following and trusting my instincts and it paid off. I just hope that all new CF moms will read this and know from mine and others experience to follow their instincts and continue to be persistant when they just know that something is being missed. At least until there is concrete proof that the instinct is wrong.
I never knew that there were so many things growing in those lungs, I expected one maybe two new bugs but never anticipated the three, and one really big one. With some answers now we can move forward and hopefully use a better treatment plan that will finally allow us to get out of this rut that we have been in. Though, it may take some time to get there but agian, at least now we know what we are up against.
Thanks again to all who encouraged me not to give up on my instincts!
Patty
Nathan (CF, 14)