T
Terry
Guest
Hi!
Sorry it has been so long since I have been on the board. Life has been busy around here.
I was wondering if any of you might have experienced this situation or have any input. Marissa was hospitalized the last week of February for DIOS (all cleared up). Up until then she was consistently blowing 300 - 320 on her peak flow meter. When she got out of the hospital, her peak flow had dropped to 220. We figured she had caught a bug in the hospital, which would be typical. She did eventually start coughing more frequently (she would rarely cough before hand if she wasn't "sick"), we upped her vest treatments to 3 times a day from twice a day.
She was seen in the clinic the first week of March, and her fev1 had dropped 11 points. They started her on a 6 week course of Bactrim. She quit coughing as much and her peak flow went up to 250, still down. They saw her at the clinic when the bactrim was finished and decided to put her on it for another 6 weeks.
There has not been any further improvement. Since March she has had to go to the clinic every 6 weeks instead of every 3 months. We are not being given a reason for the increase in clinic visits, or the drop in her peak flow, or the drop in her fev1, or the coughing. She is not culturing anything other than the MRSA that she has had (untreated) for a couple of years now.
She goes to Johns Hopkins, so we know she is in good hands as far as qualifications go. We just don't understand why there is an obvious concern (increased visits), but no further treatment for whatever must be there causing this issue.
Is this just supposed to happen without reason? I keep asking myself if maybe although we KNOW that she is not "healthy," do we not accept that she is "sick." Do we accept that this is the new "norm." Is it not reasonable to expect her to not cough most of the night in bed, or to blow a 320 again?
I'm sorry, I think I am beginning to get depressed. I'm so angry about issues that go on with her real mom, not taking things serious like she is supposed to get the feedings we send...I feel like I am getting lost...I thought I knew what I was doing, but now I can't figure this out.
It is too much of a difference to not mean something needs to be done.
I think we have all had this nagging, ticking sound in the back of our minds. Marissa wasn't diagnosed with CF until she was 4, although she was constantly sick and being seen for "asthma." When they diagnosed her, we were told she probably wouldn't make it past nine years old. We shrugged that off the past few years, but she had been doing so well since getting all her treatments. She turned 9 last April.
Thanks for reading.
Maybe I just needed to vent. That is so hard to do when you don't want to upset people or have her over hear.
Terry
Sorry it has been so long since I have been on the board. Life has been busy around here.
I was wondering if any of you might have experienced this situation or have any input. Marissa was hospitalized the last week of February for DIOS (all cleared up). Up until then she was consistently blowing 300 - 320 on her peak flow meter. When she got out of the hospital, her peak flow had dropped to 220. We figured she had caught a bug in the hospital, which would be typical. She did eventually start coughing more frequently (she would rarely cough before hand if she wasn't "sick"), we upped her vest treatments to 3 times a day from twice a day.
She was seen in the clinic the first week of March, and her fev1 had dropped 11 points. They started her on a 6 week course of Bactrim. She quit coughing as much and her peak flow went up to 250, still down. They saw her at the clinic when the bactrim was finished and decided to put her on it for another 6 weeks.
There has not been any further improvement. Since March she has had to go to the clinic every 6 weeks instead of every 3 months. We are not being given a reason for the increase in clinic visits, or the drop in her peak flow, or the drop in her fev1, or the coughing. She is not culturing anything other than the MRSA that she has had (untreated) for a couple of years now.
She goes to Johns Hopkins, so we know she is in good hands as far as qualifications go. We just don't understand why there is an obvious concern (increased visits), but no further treatment for whatever must be there causing this issue.
Is this just supposed to happen without reason? I keep asking myself if maybe although we KNOW that she is not "healthy," do we not accept that she is "sick." Do we accept that this is the new "norm." Is it not reasonable to expect her to not cough most of the night in bed, or to blow a 320 again?
I'm sorry, I think I am beginning to get depressed. I'm so angry about issues that go on with her real mom, not taking things serious like she is supposed to get the feedings we send...I feel like I am getting lost...I thought I knew what I was doing, but now I can't figure this out.
It is too much of a difference to not mean something needs to be done.
I think we have all had this nagging, ticking sound in the back of our minds. Marissa wasn't diagnosed with CF until she was 4, although she was constantly sick and being seen for "asthma." When they diagnosed her, we were told she probably wouldn't make it past nine years old. We shrugged that off the past few years, but she had been doing so well since getting all her treatments. She turned 9 last April.
Thanks for reading.
Maybe I just needed to vent. That is so hard to do when you don't want to upset people or have her over hear.
Terry