2013 tune #2

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TICMOMOFF1

New member
Our 10 yr old CF dd508 back in since her last one in March. She lost over 5 lbs and coughing & has been on several rounds of antibiotics but still not well. Today is the second day & This morning work up with a 103 temp, they stopped the antibiotics so they can do a bronch in the morning. They said so that they can get a better sample. Getting ready for her PICC line.
 
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TICMOMOFF1

New member
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 Acapella after her vest treatment. Anyone else doing this and also using the breath actuated nebulizer because she was not breathing it well. So far she only grew MRSA from what they got from the Endoscopy but more test will come back later and their rechecking her sugar or A1C it was up slightly will do a Glucose tolerance tests on July 3rd. Running Cefapime every 4 hrs, then Tobramycin 30 mins then her Vanc for 2 hours and plenty of fluids. Yet still not gaining weight back either. We shall see what will come.
 
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TreasureGoddess

Member
Sounds like they have a good plan, hang in there and hope things turn around quickly. Usually my kiddo (also ddF508) shows pretty good results within about 3-4 days of IV meds. Don't stress on the "heavy congestion" or "heavy mucous" as of course she does. She's got CF. It's part of life and there will be a lot to deal with. As she gets feeling better, make sure to see if you can go for walks in the hallways, or even outdoors a bit. The more you exercise, the clearer the lungs. It's hard to clear mucous laying in a bed.
 
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