CF Mom

[trigueros79]

I need advice. My daughter Linda has CF and has been in the hospital 5 times this year, once for surgery(small bowel obstruction) the rest tune ups. I havent been on the forums lately becuase of all that is going on, and I just joined this forum this year.

This has been the roughest year so far in that I am working and going to school part time also I am divorced so there is no support from the father. Also Linda is in Daycare, I dont have many options in this area, because if I dont work we wont eat, one thing I have found that regardless of CF life doesnt stop, you know...
I guess I feel a little wore down. Linda got of the hospital two Thurs. ago and we went to the ER yesterday because of fever and the cough.

We do all treatments religiously and it seems she always has the most congested cough.
What do you do when it seems as though treatments and meds are not working. I have a lot of faith and dont get discouraged. I am quite the opposite I get stronger when circumstances grow tougher. I just need to hear advice that is not from docs... Thanks!

 

[JazzysMom]

It is possible especially this time of year that your daughter has a virus. If that is the case then antibiotics wont help with getting rid of it. It will help with any infection that might come along with it tho. Be sure she gets plenty of fluids. That is important for anyone that is ill, but especially a CFer. I know its hard. As a Mom with CF I know what its like, but with the situation reversed. Try to rest when she does. My daughter is 7 & I still have her take naps for my sake. She recently had her first winter cold & I just pumped fluids & made her sleep. She bounced back quicker than usual. Keep up the treatments also. Try to control the fevers as much as possible. That really drains the body. My daughter (non CFer) needs to alternate motrin & tylenol if she has a bad fever because she cant go a full 4 hours without spiking one. She has always been like this. Fortunately I learned early & keep it on hand! Good Luck!

 

[HollyCatheryn]

Melissa's suggestions are good. Fluids, rest, keep her home on the days that you can. If she's old enough, exercise is good to keep the stuff from settling in her lungs. Exercise can be anything - it should get her breathing hard, increases her heart rate and can make her cough - running, jumping, laughing, singing... Try to keep her sinuses healthy. Sinuses are notorious for harboring infection that drains down into the lungs - you treat the lung infection, but it just keeps coming back, because it is really in the sinuses. Saline in the nose really helps flush out pollens and germs and keeps the sinuses moist and healthy. Keep her nutrition as optimal as possible. Is she taking good vitamins? If she doesn't eat really well consider juicing regular food and have her drink it. She'll absorb more nutrients this way and she won't have to chew it up. I have a few tips listed on <A href="http://www.geocities.com/MurrensNatureMama/wellness">www.geocities.com/MurrensNatureMama/wellness</A>. Hope that helps.We do understand how hard it can be that nothing slows down even when you've got 5 more things to worry with than everyone else you know. Hang in there and come here anytime you need suggestions or support.