We have 20 more days of Froggy's LONG treatments. After that, we'll have a month off before we start again. One month on, one month off, for a year. Geez. Fortunately Froggy is actually sitting still for her treatments...kind of.
HI! I'm a 33 year old CFer. I found your blog awhile ago. Froggy is just too cute!
I'm surprised the masks don't have straps anymore. When I was a kid they had straps. I'm sure they were far less efficient, this was the 1980's after all.
I also wanted to comment on the amount of time TOBI is taking. It should take about 20-25 minutes tops. I wonder if your compressor is outputting enough PSI. That could be why it's taking much longer. How old is the compressor? Which one do you have? I have the PARI Ultra II, but it's relatively new and it works great, about 3 minutes per mL, which would be 15 minutes for TOBI. I also use the Pari LC plus nebs, which is what I think I see in the picture. The other time saver is, once it starts sputtering, even though there is medicine left in the bottom of the neb cup, you are DONE! That is called "dead volume" and it's meant to be wasted. So if you have to start tipping and tapping and shaking to get the last bit out, you can stop doing that. It's not supposed to be inhaled anyway. That will probably save you another 5-10 minutes.
I know you don't know me, and I don't want to come off as rude, but I hope this helps. From one CF family to another. :)
We're on our third nebulizer and it's a Pari Proneb Ultra II. I have NO idea why it takes so long to nebulize Tobi, and I change the filters all the time. But I just called our nurse care manager again to see if we can get a new one. Maybe ours just burn out!
And we do have straps for the mask, but Froggy won't wear it. She just tears it off and that's the end of that. So I have to sit there with her the entire time. :(
Thanks so much for your advice. I hope we're able to get to the bottom of it and decrease our neb times!
We had similar issues with Max's first pari proneb ultra when he was a baby. Duoneb took 20-25 minutes and tobi took 45-50. Then one day my husband's cousin gave us a spare compressor that her daughter used to use for asthma and found out our brand new pari was faulty -- duoneb took 10 minutes and tobi took 23.
'Course didn't figure this out until AFTER the warranty had expired on the pari. Grrr!
We have 20 more days of Froggy's LONG treatments. After that, we'll have a month off before we start again. One month on, one month off, for a year. Geez. Fortunately Froggy is actually sitting still for her treatments...kind of. 
4 comments:
HI! I'm a 33 year old CFer. I found your blog awhile ago. Froggy is just too cute!
I'm surprised the masks don't have straps anymore. When I was a kid they had straps. I'm sure they were far less efficient, this was the 1980's after all.
I also wanted to comment on the amount of time TOBI is taking. It should take about 20-25 minutes tops. I wonder if your compressor is outputting enough PSI. That could be why it's taking much longer. How old is the compressor? Which one do you have? I have the PARI Ultra II, but it's relatively new and it works great, about 3 minutes per mL, which would be 15 minutes for TOBI. I also use the Pari LC plus nebs, which is what I think I see in the picture. The other time saver is, once it starts sputtering, even though there is medicine left in the bottom of the neb cup, you are DONE! That is called "dead volume" and it's meant to be wasted. So if you have to start tipping and tapping and shaking to get the last bit out, you can stop doing that. It's not supposed to be inhaled anyway. That will probably save you another 5-10 minutes.
I know you don't know me, and I don't want to come off as rude, but I hope this helps. From one CF family to another. :)
I think it's great when experienced CFers comment like this. I'm sure these are things that you may not know.
Ella finally got her vest and is shaking away.
Tara,
Hi, and thanks!!!
We're on our third nebulizer and it's a Pari Proneb Ultra II. I have NO idea why it takes so long to nebulize Tobi, and I change the filters all the time. But I just called our nurse care manager again to see if we can get a new one. Maybe ours just burn out!
And we do have straps for the mask, but Froggy won't wear it. She just tears it off and that's the end of that. So I have to sit there with her the entire time. :(
Thanks so much for your advice. I hope we're able to get to the bottom of it and decrease our neb times!
We had similar issues with Max's first pari proneb ultra when he was a baby. Duoneb took 20-25 minutes and tobi took 45-50. Then one day my husband's cousin gave us a spare compressor that her daughter used to use for asthma and found out our brand new pari was faulty -- duoneb took 10 minutes and tobi took 23.
'Course didn't figure this out until AFTER the warranty had expired on the pari. Grrr!
liza aka ratatosk
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