Hi Everyone,
It has been about 5 months since writing my first mail about something being wrong but nothing growing in my sons cultures. It took almost two years now, but this tune-up finally brought some answers. I was told that I had had our primary pulmonary doctors attention, but I finally got the rest of the teams attention. I was right, something was going on down in those lungs even though the cultures said otherwise. My lesson, don't give up on your mothers intuition until absoluetly proven wrong!
This time before coming in for the tune-up we took Nathan off all of the antibiotics he was on including the neb ones. Next, I got them to do an induced sputum before starting anything as far as meds and IV's were concerned. It work, he grew 2 new bugs for him so far, psudeomonas and stenotrophomonas. We are still waiting on the mycobacterium, that takes up to six weeks to get final results on. As much as I wish I was wrong, I knew in my heart of hearts they were missing something, and it turns out I was right.
Thanks to everyone who encouraged me to keep going and fighting for answers! May I encourage all of you to follow your gut instincts, they are often right.
Patty
Mother of 4, Nathan 13 w/CF; Chaise 17 no CF & not a carrier; Joe 15 no CF & not a carrier; & Laura 12 no CF & not a carrier
It has been about 5 months since writing my first mail about something being wrong but nothing growing in my sons cultures. It took almost two years now, but this tune-up finally brought some answers. I was told that I had had our primary pulmonary doctors attention, but I finally got the rest of the teams attention. I was right, something was going on down in those lungs even though the cultures said otherwise. My lesson, don't give up on your mothers intuition until absoluetly proven wrong!
This time before coming in for the tune-up we took Nathan off all of the antibiotics he was on including the neb ones. Next, I got them to do an induced sputum before starting anything as far as meds and IV's were concerned. It work, he grew 2 new bugs for him so far, psudeomonas and stenotrophomonas. We are still waiting on the mycobacterium, that takes up to six weeks to get final results on. As much as I wish I was wrong, I knew in my heart of hearts they were missing something, and it turns out I was right.
Thanks to everyone who encouraged me to keep going and fighting for answers! May I encourage all of you to follow your gut instincts, they are often right.
Patty
Mother of 4, Nathan 13 w/CF; Chaise 17 no CF & not a carrier; Joe 15 no CF & not a carrier; & Laura 12 no CF & not a carrier