Hi

[Larasmom]

The Tobi is taking about 25 minutes, so I guess that means the compressor is working correctly. Lara hates it. The older shes getting the harder time she gives me. All her treatments combined take about 2 hours a day, so between homework and that she doesn't get much free time since she goes to bed around 8:00 pm. I find myself sitting there answering the same question "is it done yet?" for the entire time.
CJP's Mom: Yes it is very scary, but, as you can see from the answers above the meds do work...thats a GREAT thing! As far as Collins hospital stay , I've been there, just bring lots of favorite toys and all your patience, the IV will stay put as long as they tape it up to a board the right way and hopefully he will do fine. I wouldn't let him off the bed, it just makes things worse cause then he will want to crawl aound. Hang in there!
Carolyn: That is awesome news! I will keep my fingers crossed for you too!

 

[Larasmom]

The Tobi is taking about 25 minutes, so I guess that means the compressor is working correctly. Lara hates it. The older shes getting the harder time she gives me. All her treatments combined take about 2 hours a day, so between homework and that she doesn't get much free time since she goes to bed around 8:00 pm. I find myself sitting there answering the same question "is it done yet?" for the entire time.
<br />CJP's Mom: Yes it is very scary, but, as you can see from the answers above the meds do work...thats a GREAT thing! As far as Collins hospital stay , I've been there, just bring lots of favorite toys and all your patience, the IV will stay put as long as they tape it up to a board the right way and hopefully he will do fine. I wouldn't let him off the bed, it just makes things worse cause then he will want to crawl aound. Hang in there!
<br />Carolyn: That is awesome news! I will keep my fingers crossed for you too!
<br />
<br />

 

[kfw1963]

I have cultured pseudo for as long as I can remember(well over 25yrs) and for the most part it has not posed a problem. I usually culture 3 strains and bounce between mucoid and non. This is yet another part of CF that is unpredictable. Many people do not experience significant issues(aside from increased/different meds) while in others it can have a serious impact. I'm not here to say don't worry but I just want to give another side to let you know that while it may be discouraging it does not always mean an imminent decline in health.

 

[kfw1963]

I have cultured pseudo for as long as I can remember(well over 25yrs) and for the most part it has not posed a problem. I usually culture 3 strains and bounce between mucoid and non. This is yet another part of CF that is unpredictable. Many people do not experience significant issues(aside from increased/different meds) while in others it can have a serious impact. I'm not here to say don't worry but I just want to give another side to let you know that while it may be discouraging it does not always mean an imminent decline in health.

 

[kfw1963]

I have cultured pseudo for as long as I can remember(well over 25yrs) and for the most part it has not posed a problem. I usually culture 3 strains and bounce between mucoid and non. This is yet another part of CF that is unpredictable. Many people do not experience significant issues(aside from increased/different meds) while in others it can have a serious impact. I'm not here to say don't worry but I just want to give another side to let you know that while it may be discouraging it does not always mean an imminent decline in health.

 

[CJPsMom]

Thanks for all the encouraging words (for all of us 1st time PAers). I thought the saline neb took forever...Tobi...ugh. We're up to over an hour a day of neb treatments, plus chest therapy, and they want him to eat 4 times a day...and he's only awake about 12 hours a day. Not to mention trying to space out eating with the meds/nebs that make him sick. *sigh*

It's hard not to wonder if he's a more severe case and what all this means for him so young. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[CJPsMom]

Thanks for all the encouraging words (for all of us 1st time PAers). I thought the saline neb took forever...Tobi...ugh. We're up to over an hour a day of neb treatments, plus chest therapy, and they want him to eat 4 times a day...and he's only awake about 12 hours a day. Not to mention trying to space out eating with the meds/nebs that make him sick. *sigh*

It's hard not to wonder if he's a more severe case and what all this means for him so young. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[CJPsMom]

Thanks for all the encouraging words (for all of us 1st time PAers). I thought the saline neb took forever...Tobi...ugh. We're up to over an hour a day of neb treatments, plus chest therapy, and they want him to eat 4 times a day...and he's only awake about 12 hours a day. Not to mention trying to space out eating with the meds/nebs that make him sick. *sigh*
<br />
<br />It's hard not to wonder if he's a more severe case and what all this means for him so young. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[Ratatosk]

I remember those days... We were told to feed DS every 3-4 hours, while I was on maternity leave or when DS had a cough or wheeze we were to do CPT at least 4 times a day. Fortunately, DS slept thru his treatments or would fall asleep during them as they seemed to calm him, didn't have issues with doing it too close to feeds. AND he ate better when we would sleep feed him a bottle. He was calmer, I was calmer... I'd sometimes fall asleep feeding him or start to doze in the middle of CPT.

 

[Ratatosk]

I remember those days... We were told to feed DS every 3-4 hours, while I was on maternity leave or when DS had a cough or wheeze we were to do CPT at least 4 times a day. Fortunately, DS slept thru his treatments or would fall asleep during them as they seemed to calm him, didn't have issues with doing it too close to feeds. AND he ate better when we would sleep feed him a bottle. He was calmer, I was calmer... I'd sometimes fall asleep feeding him or start to doze in the middle of CPT.

 

[Ratatosk]

I remember those days... We were told to feed DS every 3-4 hours, while I was on maternity leave or when DS had a cough or wheeze we were to do CPT at least 4 times a day. Fortunately, DS slept thru his treatments or would fall asleep during them as they seemed to calm him, didn't have issues with doing it too close to feeds. AND he ate better when we would sleep feed him a bottle. He was calmer, I was calmer... I'd sometimes fall asleep feeding him or start to doze in the middle of CPT.

 

[Larasmom]

Thanks to all that replied! You guys are great. Day 16 of Tobi....only 12 more days to go. Keeping my fingers and toes crossed that its gone!

 

[Larasmom]

Thanks to all that replied! You guys are great. Day 16 of Tobi....only 12 more days to go. Keeping my fingers and toes crossed that its gone!

 

[Larasmom]

Thanks to all that replied! You guys are great. Day 16 of Tobi....only 12 more days to go. Keeping my fingers and toes crossed that its gone!
<br />

 

[ymikhale]

My dd first cultured it when she was 15 m/o following a cold. She really had almost no symptoms and we were shocked and scared. Was put on Cipro and Tobi (3 rounds), but PA was gone after the first one. We breathed a sigh of relief, but a year later the same story all over again. We got rid of it this time as well, but now i am veru vigilant and do sputum cultures more often to get the best chance of catching it early.

 

[ymikhale]

My dd first cultured it when she was 15 m/o following a cold. She really had almost no symptoms and we were shocked and scared. Was put on Cipro and Tobi (3 rounds), but PA was gone after the first one. We breathed a sigh of relief, but a year later the same story all over again. We got rid of it this time as well, but now i am veru vigilant and do sputum cultures more often to get the best chance of catching it early.

 

[ymikhale]

My dd first cultured it when she was 15 m/o following a cold. She really had almost no symptoms and we were shocked and scared. Was put on Cipro and Tobi (3 rounds), but PA was gone after the first one. We breathed a sigh of relief, but a year later the same story all over again. We got rid of it this time as well, but now i am veru vigilant and do sputum cultures more often to get the best chance of catching it early.

 

[JENNYC]

Oh and FYI that I almost forgot and they may have told you..Tobi can kill any fish that you have in your home. I found that out when I went and stayed with a relative one time. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[JENNYC]

Oh and FYI that I almost forgot and they may have told you..Tobi can kill any fish that you have in your home. I found that out when I went and stayed with a relative one time. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[JENNYC]

Oh and FYI that I almost forgot and they may have told you..Tobi can kill any fish that you have in your home. I found that out when I went and stayed with a relative one time. <img src="i/expressions/face-icon-small-sad.gif" border="0">