CF Mom

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mom2lillian

New member
well today was the first early day. I am not working this week but we are doing 1/2 days at my sisters this week and then next week mon tue she will go whole days for adjustment's sake and I start work on wed.

We managed to get out driveway only 5 minutes after goal but in re-evaluating I think we will need to leave about 5 minutes earlier than originally planned.

I woke up showered, then did zopenex pulmozyme while did vest, then pumped one side, she woke up shortly thereafter and my husband got her ready while I got ready and then I fed her and we were out of the house shortly thereafter. Total time 1 hour 40 minutes so not too bad I thought of showering night before but I think I need shower to wake up! LOL Definately have to make sure all bags packed, clothes out etc to make mornign a bit smoother.

It went pretty well at my sisters her two kids liked having her there, novelty for now wait until they start having to share htough - LOL, anyway she didnt sleep fro my sister but other than that pretty good.



Oh and I am compromising a bit and doing tobi on the road - oh well I did it for 4 years before I knew I shouldnt and I am still doing way better than I did before I had her. I dont think there is much difference but it is just not 'approved'.
 
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NoExcuses

New member
be cafeful about doing TOBI on the road. if you're using a PARI trek, you're geting a subtheraputic dose and inducing resistance.

if you're plugging the compressor into the car charger, the PSI could be lower as well and you could be inducing resistance.

get an eFlow if you need something portable that takes less time <img src="i/expressions/face-icon-small-smile.gif" border="0"> good luck!
 
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NoExcuses

New member
be cafeful about doing TOBI on the road. if you're using a PARI trek, you're geting a subtheraputic dose and inducing resistance.

if you're plugging the compressor into the car charger, the PSI could be lower as well and you could be inducing resistance.

get an eFlow if you need something portable that takes less time <img src="i/expressions/face-icon-small-smile.gif" border="0"> good luck!
 
N

NoExcuses

New member
be cafeful about doing TOBI on the road. if you're using a PARI trek, you're geting a subtheraputic dose and inducing resistance.

if you're plugging the compressor into the car charger, the PSI could be lower as well and you could be inducing resistance.

get an eFlow if you need something portable that takes less time <img src="i/expressions/face-icon-small-smile.gif" border="0"> good luck!
 
M

mom2lillian

New member
Amy-thanks for the input, I mentioned this to my docs and this was news to them. The TOBI rep is coming in thsi week and they are going to talk with them about this since my clinic is one told me ok in first place.

I have thought of a new idea on how to do my schedule it woudl mean driving separate but I think it will work out better.

I will get up at same time as DH and feed DD while he gets ready then I will do my breathing treatments while he gets DD ready and he can take DD to sitters this in addition to me driving separate and going to work 1 hour later will give me time to wake up at normal time 5:10-5:30 of before baby which seems much better to me even though it is only an hour or so and also go to the gym most days before work and then I can shower and leave from there. This way I dont have to worry abotu workign out in evening when I want to be home with her, I have plenty time to get treatments done, If I need to be late to work for my situation not a big deal but for DH it is a big deal so this will give me additional flexibility AND it keeps me out of the daycare situation with all germs <img src="i/expressions/face-icon-small-smile.gif" border="0"> --I am only using my sister for 4 months then she is going to daycare.

I am also considering doing my pulmozyme while on road instead and before you say anything I take 2 vials a day by my own choice - I twisted docs arm since pulmozyme works so well for me and my researching it showed company did some trials this way with great results but most cant afford it (my insurance covers 100%) and it only works well in adults with high PFT's. So I figure that since I take 2 vials I will still be getting more than the recommended dose either way! In addition this will allow me to do it post clearance which will be better for me and it will put it at a time where the peak effectiveness of the pulmozyme (for me and in clnical studies) is at 4 hours whcih woudl be on my lunch time so I can do some huffing or acapella if need be.

I will be 'pitching' idea to dh tonight <img src="i/expressions/face-icon-small-smile.gif" border="0"> if he is in a good mood <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
M

mom2lillian

New member
Amy-thanks for the input, I mentioned this to my docs and this was news to them. The TOBI rep is coming in thsi week and they are going to talk with them about this since my clinic is one told me ok in first place.

I have thought of a new idea on how to do my schedule it woudl mean driving separate but I think it will work out better.

I will get up at same time as DH and feed DD while he gets ready then I will do my breathing treatments while he gets DD ready and he can take DD to sitters this in addition to me driving separate and going to work 1 hour later will give me time to wake up at normal time 5:10-5:30 of before baby which seems much better to me even though it is only an hour or so and also go to the gym most days before work and then I can shower and leave from there. This way I dont have to worry abotu workign out in evening when I want to be home with her, I have plenty time to get treatments done, If I need to be late to work for my situation not a big deal but for DH it is a big deal so this will give me additional flexibility AND it keeps me out of the daycare situation with all germs <img src="i/expressions/face-icon-small-smile.gif" border="0"> --I am only using my sister for 4 months then she is going to daycare.

I am also considering doing my pulmozyme while on road instead and before you say anything I take 2 vials a day by my own choice - I twisted docs arm since pulmozyme works so well for me and my researching it showed company did some trials this way with great results but most cant afford it (my insurance covers 100%) and it only works well in adults with high PFT's. So I figure that since I take 2 vials I will still be getting more than the recommended dose either way! In addition this will allow me to do it post clearance which will be better for me and it will put it at a time where the peak effectiveness of the pulmozyme (for me and in clnical studies) is at 4 hours whcih woudl be on my lunch time so I can do some huffing or acapella if need be.

I will be 'pitching' idea to dh tonight <img src="i/expressions/face-icon-small-smile.gif" border="0"> if he is in a good mood <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
M

mom2lillian

New member
Amy-thanks for the input, I mentioned this to my docs and this was news to them. The TOBI rep is coming in thsi week and they are going to talk with them about this since my clinic is one told me ok in first place.

I have thought of a new idea on how to do my schedule it woudl mean driving separate but I think it will work out better.

I will get up at same time as DH and feed DD while he gets ready then I will do my breathing treatments while he gets DD ready and he can take DD to sitters this in addition to me driving separate and going to work 1 hour later will give me time to wake up at normal time 5:10-5:30 of before baby which seems much better to me even though it is only an hour or so and also go to the gym most days before work and then I can shower and leave from there. This way I dont have to worry abotu workign out in evening when I want to be home with her, I have plenty time to get treatments done, If I need to be late to work for my situation not a big deal but for DH it is a big deal so this will give me additional flexibility AND it keeps me out of the daycare situation with all germs <img src="i/expressions/face-icon-small-smile.gif" border="0"> --I am only using my sister for 4 months then she is going to daycare.

I am also considering doing my pulmozyme while on road instead and before you say anything I take 2 vials a day by my own choice - I twisted docs arm since pulmozyme works so well for me and my researching it showed company did some trials this way with great results but most cant afford it (my insurance covers 100%) and it only works well in adults with high PFT's. So I figure that since I take 2 vials I will still be getting more than the recommended dose either way! In addition this will allow me to do it post clearance which will be better for me and it will put it at a time where the peak effectiveness of the pulmozyme (for me and in clnical studies) is at 4 hours whcih woudl be on my lunch time so I can do some huffing or acapella if need be.

I will be 'pitching' idea to dh tonight <img src="i/expressions/face-icon-small-smile.gif" border="0"> if he is in a good mood <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
M

mneville

Guest
I also work full time as a special ed teacher.We were very lucky that both sets of grandparents stepped up to help us out. They are both nurses and care for Aidan while we work. They do one VEST treatment in the am for Aidan. I do the second one with nebs at night.

I think the hardest thing is getting off to take him to all his Dr appts. He sees the CF doc every two months plus when sick. He sees an ENT regularly plus the regular PEDI as well as some other docs. So that is challenging. Teaching is a great occupation b/c we get off a lot as it is but it can still be hard. Hard but doable. Best of luck.

Megan
 
M

mneville

Guest
I also work full time as a special ed teacher.We were very lucky that both sets of grandparents stepped up to help us out. They are both nurses and care for Aidan while we work. They do one VEST treatment in the am for Aidan. I do the second one with nebs at night.

I think the hardest thing is getting off to take him to all his Dr appts. He sees the CF doc every two months plus when sick. He sees an ENT regularly plus the regular PEDI as well as some other docs. So that is challenging. Teaching is a great occupation b/c we get off a lot as it is but it can still be hard. Hard but doable. Best of luck.

Megan
 
M

mneville

Guest
I also work full time as a special ed teacher.We were very lucky that both sets of grandparents stepped up to help us out. They are both nurses and care for Aidan while we work. They do one VEST treatment in the am for Aidan. I do the second one with nebs at night.

I think the hardest thing is getting off to take him to all his Dr appts. He sees the CF doc every two months plus when sick. He sees an ENT regularly plus the regular PEDI as well as some other docs. So that is challenging. Teaching is a great occupation b/c we get off a lot as it is but it can still be hard. Hard but doable. Best of luck.

Megan
 
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hbollotte

New member
I feel you on the slacker part. I'm 13 weeks and i'm still slacking on my meds. I need to get in a routine. I need about five different nebulizers to keep everywhere. i also need a portable fridge to keep my meds in...lol. it's going to be crazy once i have the baby in november. i really want to breastfeed so i hope everything works out and i get my butt in gear.
 
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hbollotte

New member
I feel you on the slacker part. I'm 13 weeks and i'm still slacking on my meds. I need to get in a routine. I need about five different nebulizers to keep everywhere. i also need a portable fridge to keep my meds in...lol. it's going to be crazy once i have the baby in november. i really want to breastfeed so i hope everything works out and i get my butt in gear.
 
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hbollotte

New member
I feel you on the slacker part. I'm 13 weeks and i'm still slacking on my meds. I need to get in a routine. I need about five different nebulizers to keep everywhere. i also need a portable fridge to keep my meds in...lol. it's going to be crazy once i have the baby in november. i really want to breastfeed so i hope everything works out and i get my butt in gear.
 
M

mom2lillian

New member
Just thought I would update that all is really working well with full time work and all. DH does get DD ready 100% in morning and takes her to daycare so this is HUGE key. I go to work an hour later. I get up about 5 do my treatments go to gym 45 minutes get ready there and off to work. If I am on TOBI I do my pulmozyme on the road.

In evening DH watches DD while I do vest for 1/2 hour and TOBI if applicable--man I wish I didnt need TOBI the months without are soo much easier! ANyway other than that it is cookign dinnner, making bottles for next day, cleaning up a bit --yeah right, and bath time for DD. Then it is time to relax and get ready for the next day! It is very busy but this is what I 'signed on for' and I am loving it. Not to say I am not tired some days---err all days but not bad.
 
M

mom2lillian

New member
Just thought I would update that all is really working well with full time work and all. DH does get DD ready 100% in morning and takes her to daycare so this is HUGE key. I go to work an hour later. I get up about 5 do my treatments go to gym 45 minutes get ready there and off to work. If I am on TOBI I do my pulmozyme on the road.

In evening DH watches DD while I do vest for 1/2 hour and TOBI if applicable--man I wish I didnt need TOBI the months without are soo much easier! ANyway other than that it is cookign dinnner, making bottles for next day, cleaning up a bit --yeah right, and bath time for DD. Then it is time to relax and get ready for the next day! It is very busy but this is what I 'signed on for' and I am loving it. Not to say I am not tired some days---err all days but not bad.
 
M

mom2lillian

New member
Just thought I would update that all is really working well with full time work and all. DH does get DD ready 100% in morning and takes her to daycare so this is HUGE key. I go to work an hour later. I get up about 5 do my treatments go to gym 45 minutes get ready there and off to work. If I am on TOBI I do my pulmozyme on the road.

In evening DH watches DD while I do vest for 1/2 hour and TOBI if applicable--man I wish I didnt need TOBI the months without are soo much easier! ANyway other than that it is cookign dinnner, making bottles for next day, cleaning up a bit --yeah right, and bath time for DD. Then it is time to relax and get ready for the next day! It is very busy but this is what I 'signed on for' and I am loving it. Not to say I am not tired some days---err all days but not bad.
 
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wanderlost

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>

Just thought I would update that all is really working well with full time work and all. DH does get DD ready 100% in morning and takes her to daycare so this is HUGE key. I go to work an hour later. I get up about 5 do my treatments go to gym 45 minutes get ready there and off to work. If I am on TOBI I do my pulmozyme on the road.



In evening DH watches DD while I do vest for 1/2 hour and TOBI if applicable--man I wish I didnt need TOBI the months without are soo much easier! ANyway other than that it is cookign dinnner, making bottles for next day, cleaning up a bit --yeah right, and bath time for DD. Then it is time to relax and get ready for the next day! It is very busy but this is what I 'signed on for' and I am loving it. Not to say I am not tired some days---err all days but not bad.</end quote></div>


I am glad things are working out for. It's great that hubby can help. I always remind mine - you want me to be around, you gotta help with the treatments. Kinda harsh, but true.
 
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wanderlost

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>

Just thought I would update that all is really working well with full time work and all. DH does get DD ready 100% in morning and takes her to daycare so this is HUGE key. I go to work an hour later. I get up about 5 do my treatments go to gym 45 minutes get ready there and off to work. If I am on TOBI I do my pulmozyme on the road.



In evening DH watches DD while I do vest for 1/2 hour and TOBI if applicable--man I wish I didnt need TOBI the months without are soo much easier! ANyway other than that it is cookign dinnner, making bottles for next day, cleaning up a bit --yeah right, and bath time for DD. Then it is time to relax and get ready for the next day! It is very busy but this is what I 'signed on for' and I am loving it. Not to say I am not tired some days---err all days but not bad.</end quote></div>


I am glad things are working out for. It's great that hubby can help. I always remind mine - you want me to be around, you gotta help with the treatments. Kinda harsh, but true.
 
W

wanderlost

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>

Just thought I would update that all is really working well with full time work and all. DH does get DD ready 100% in morning and takes her to daycare so this is HUGE key. I go to work an hour later. I get up about 5 do my treatments go to gym 45 minutes get ready there and off to work. If I am on TOBI I do my pulmozyme on the road.



In evening DH watches DD while I do vest for 1/2 hour and TOBI if applicable--man I wish I didnt need TOBI the months without are soo much easier! ANyway other than that it is cookign dinnner, making bottles for next day, cleaning up a bit --yeah right, and bath time for DD. Then it is time to relax and get ready for the next day! It is very busy but this is what I 'signed on for' and I am loving it. Not to say I am not tired some days---err all days but not bad.</end quote></div>


I am glad things are working out for. It's great that hubby can help. I always remind mine - you want me to be around, you gotta help with the treatments. Kinda harsh, but true.
 
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