Thursday, July 8

Another long one...

Well, the pediatrician appointment went well (although I always feel as if they don't know what they are looking for in CF patients). They listen to her lungs and say "they sound good!" As if she would ever sound like she is gasping for air? If so, we wouldn't be there, we would be at the CF clinic. The doctor was pleased to see that her ear infection looked cured and not too concerned about her cough. I guess it is just a different idea for the "healthy" population of kids. A cough? No biggie? A CF patient with a cough at a CF clinic....A BIGGIE. So, the pediatrician said to keep giving her the amoxicillian for the remainder of the week and said she was on the way to recovery.

Well, as you can imagine. John Hopkins wasn't entirely pleased with the pediatrician's idea that she was "recovering well." Don't get me wrong- the nurse was very happy to hear that her ear looked great but that is not the main concern for all of us, especially those lung doctors and nurses. That cough was the talk of my phone call to the clinic and really my main concern still. Madeline threw up after coughing a bit today. It sounds so deep and so phlegmy that I think it literally made her gag when she hacked it up. Sure enough vomit was covering our entry way. I made a quick dive for the tile floor and made it just in time to soak the entry way runner.

She isn't coughing more but, the cough is just not entirely going away. So the plan is to switch over to Bactrim (used to treat pnemonia) and let it take its course in place of the amoxicillian. (CF doctors scoff at amoxicillian- it's a weakling drug for those lungs!) She will take it until Monday and then we will need to call Hopkins Monday to explain the status of her cough. I am hopeful that this damn CF will not get the best of us. I have faith in Bactrim...and we WILL get though this.

I am so exhausted mentally from treatments today and medications. Feedings and a fussy baby.We are so ready to be done with this CF, with this fight, but we won't give up. Not for a second. I am hopeful for Monday. We all are. Go bactrim, go....

1 comment:

  1. Like I said on my FB comment...way to go on the aggressive treatment. I feel like when I go to the pediatrician I am informing them about Bryce instead of them informing me. There are several docs at our pediatrician office and I have figured out which ones treat on the aggressive side so I only see those docs now. I seriously thing Bryce is the ONLY CF patient they have so I find that the information I give them they usually find very interesting. I always bring a copy of anything I get from clinic so they can add it to his file. I hope baby girl gets rid of that cough and fast. Hugs to you all...


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