The first clean-out...Now What?

[aannddd]

My 6 year old, who is almost 7 was admitted to the hospital on May 31st for 8 days. He contracted an infection and went through two courses of oral antibiotics, but one of his lungs wouldn't clear up. For the first time, I understood the sticky mucus that I had been hearing about for years. It was like Elmer's wood glue. His CF Specialist decided it was time to admit him for his first clean out.

After much discussion with the team, they decided to treat for Staph vs going the IV Tobi treatment. Within 48 hours his lungs sounded clear again. After a course of IV antibiotics he came home on 7 days of a high dose of Augmentin.

He finished the Augmentin on Friday and came home from school on Monday not feeling great. By Tuesday, we were in the doc's office with a high fever and a positive strep test. A course of amoxicillin was ordered and 24 hours later big improvement, but at the 48 hour mark, a yucky cough has set in. Now it is back on a course of Augmentin antibiotics.

I am wondering a few things:

After a clean-out do you return to your baseline? (Which for my son is basically no cough).

After your first clean-out how often to you find yourself going in for another?

How long do you typically get IV antibiotics for? Originally they were telling us 10-14 days, but after he responded so quickly, we went home with after only 7 days of IV antibiotics.

After having blessed with a wonderful 7 years of what I would call mild CF (a brief hospitalization for a blockage, getting over the flu twice with ease, and a couple of lung infections each year that have cleared with oral antibiotics or a course Tobi, and a healthy weight) I am worried that we have hit a turning point. The only thing my son has ever cultured for is staph.

I would love to hear what others experiences have at this point in their disease.

 

[nmw0615]

For me, I will not leave the hospital until I am close to baseline. I know that my cycle of a health 5 months followed by a horrible month is doing damage to my lungs, so I take full advantage of tune-ups and focus on getting me as close to baseline as I can possibly get. Usually that takes about two weeks for me, although the last hospitalization was 28 days because I waited just a little too long before going in.I think I could go longer between hospitalizations if I could manage to avoid getting a cold around that 5 month mark. However, when I was younger, I rarely went in for a hospitalization as long as I stayed active and stayed on top of all my treatments and meds.I've always had IV antibiotics for at least 10 days, usually 14, before being done with the treatment. I respond very well and quickly to them, like your son, and within a week I am feeling much better. I've still completed the full10-14 days just to be on the safe side, though. Sometimes I get to go home on IV antibiotics for that last week.I would suggest getting your son into any kind of sport to keep him healthy. I played soccer all through elementary school and I know it was that near constant activity that kept me as healthy as I was. I played volleyball in middle school and was still healthy. Most of my problems started appeared after I was unable to try out for my high school volleyball team because my activity level dropped drastically. I don't think this has to be a turning point as long as you keep being proactive. It sounds like you're doing a fantastic job so far.

 

[ponytails]

Sounds more like this was an exacerbation vs. a tune up. My almost 6 yr old has gone in for a voluntary tune up once a year for the last 3 years. Always do at least 14 days. Her baseline is slight cough but since she's never sick going in, we judge it based on her xrays which seem to improve about 50%. Hope that helps. Good luck : )

 

[running4life]

I'm 26 and have only been hospitalized once in my life, right before my 25th birthday. I stayed in for 3 days, went home with 3 weeks of IV antibiotics through a PICC. Ended up only completing 2 weeks because I was getting extremely high fevers and the docs concluded that they were antibiotic induced fevers because everything else had been ruled out. I stopped them, fevers went away. My body responded really well to treatment to so 2 weeks was just fine. My lowest recorded function was 57% and within two weeks back up to 76% and now I'm back up to 86% (which has taken a LOT of work - exercising HARD daily, treatments, clean diet, etc).

For me, my baseline is coughing in the AM and an occasional cough in the day. I have been on oral antibiotics twice (maybe 3 times) since my hospitalization. You may want to try generic Mucinex. During my last infection that required oral antibiotics, I started taking this and have responded really well.