Wednesday, April 3, 2013

A Common Frustration

I wanted to post this email and my response as I'm sure plenty of you out there can relate.

I read your blog every time you post and I just love all you do for the CF community. I am not sure what exactly my point is in the email except that I guess I am a bit discouraged. I read your blog and see stories like today with your guest blogger and I am so happy for her but discouraged at the same time. I guess I don't understand how _____ can be so compliant, do all his meds, exercise, treatments, and yet we are still sitting at high 50's/low 60's on pfts with IV's and hospital now almost every 2-3 months! It just doesn't make sense to me. 
We are doing everything they say and pfts just go down. I know that colonized pseudo, apergillus, and yeast are all to blame in his lungs along with the worse sinus disease our doc has ever seen in a kid all that sinus disease is with many surgeries and he does daily nose sprays, ointments, and sinus rinses. But I see others say when their pfts go down its because of lack of compliance and exercise and then when they do those things they see improvement. But he is compliant!  
I guess I am just frustrated that we are literally doing EVERYTHING we can including now adding a nose nebulizer to dispense antibiotics straight up his nose and I am still watching my kids pfts go down. :( Again, not sure why I emailed except I am a bummed mom that just doesn't get CF ya know? Makes no sense to me. 
Thanks for your blog and all you do.
Your frustration and feeling of being discouraged is totally understandable. I'm sorry to hear that ____ is struggling so much at this time. Not cool for a kid his age to be held back!!

My response to you would be nothing earth shattering, but maybe something I say will help.

 - First, even though it feels like this has been going on forever, it could also just be a season in his life. We never know how long the season will last, but we do know that we have to keep our head up so we can recognize the next season when it comes.

 - When I was his age, I also had PFT numbers that dipped into the 50's. 

 - My best guess, which I'm sure is the best guess of the docs, is that's _____ sinuses are the big issue. Sounds like they are the driving force behind his uphill battle with his lungs. I'm happy to hear you added a sinus neb.

 - If what you're doing now isn't working, do something else. There is something out there that will help. At least, that's always my attitude. Could be a med. Could be a treatment. Could be exercise. Could be more hours. Could be prayer. Could be a combination of a bunch of things. Continue to tweak until you find the right combo. There will be road blocks and speed bumps along the way, but you have to keep driving.

 - All we are called to do is the possible. If we take care of the possible each and every day, there is no doubt that God will take care of the impossible.

 - Continue to be the strong mom that you are. CF is unpredictable. For _____, you must be that rock that is always predictable. He's always watching and takes his cues from you.

Again, nothing I said there is something you haven't heard before. Unfortunately, there isn't a magic pill. All we have is what we do each and every day that will determine our outcome. We can do everything right and still be disappointed in the outcome, but we must remember that our expectations aren't always in line with the Will of the Father. We all have our ceiling when it comes to our health, our only job is to make sure we strive to do everything to find out where that ceiling is.

I'll continue to pray for ____ and your family.