Fitting treatments into the day

[Mommy2Zeke]

When Zeke is well, we do breathing treatments and CPT 2x a day. 6 a.m. in the morning and 8 p.m. at night. When sick we do treatments 6x a day. Right now he also takes enzymes every 4 hours and imodium every six hours. He's on 16 hours of TPN a day, 24 hours of g-tube feedings, and he is also on IV antibiotics starting today (for a central line infection) Vanco every 8 hours over 2 hours. We've done as many as 2 IV antibiotics every 6 hours at home before, but most of that has been related to his Short Bowel in some way.

With his short gut issues in addition to CF, I can't work... although we had planned on me quitting work when he was 9 months old anyway, so I just 'retired' early from my job as a graphic designer. I will say you will get more used to it all and you'll get a routine down that works. And when you think it may be impossible to do it all, it works out much better than you expect.

 

[Mommy2Zeke]

When Zeke is well, we do breathing treatments and CPT 2x a day. 6 a.m. in the morning and 8 p.m. at night. When sick we do treatments 6x a day. Right now he also takes enzymes every 4 hours and imodium every six hours. He's on 16 hours of TPN a day, 24 hours of g-tube feedings, and he is also on IV antibiotics starting today (for a central line infection) Vanco every 8 hours over 2 hours. We've done as many as 2 IV antibiotics every 6 hours at home before, but most of that has been related to his Short Bowel in some way.

With his short gut issues in addition to CF, I can't work... although we had planned on me quitting work when he was 9 months old anyway, so I just 'retired' early from my job as a graphic designer. I will say you will get more used to it all and you'll get a routine down that works. And when you think it may be impossible to do it all, it works out much better than you expect.

 

[Mommy2Zeke]

When Zeke is well, we do breathing treatments and CPT 2x a day. 6 a.m. in the morning and 8 p.m. at night. When sick we do treatments 6x a day. Right now he also takes enzymes every 4 hours and imodium every six hours. He's on 16 hours of TPN a day, 24 hours of g-tube feedings, and he is also on IV antibiotics starting today (for a central line infection) Vanco every 8 hours over 2 hours. We've done as many as 2 IV antibiotics every 6 hours at home before, but most of that has been related to his Short Bowel in some way.

With his short gut issues in addition to CF, I can't work... although we had planned on me quitting work when he was 9 months old anyway, so I just 'retired' early from my job as a graphic designer. I will say you will get more used to it all and you'll get a routine down that works. And when you think it may be impossible to do it all, it works out much better than you expect.

 

[Mommy2Zeke]

When Zeke is well, we do breathing treatments and CPT 2x a day. 6 a.m. in the morning and 8 p.m. at night. When sick we do treatments 6x a day. Right now he also takes enzymes every 4 hours and imodium every six hours. He's on 16 hours of TPN a day, 24 hours of g-tube feedings, and he is also on IV antibiotics starting today (for a central line infection) Vanco every 8 hours over 2 hours. We've done as many as 2 IV antibiotics every 6 hours at home before, but most of that has been related to his Short Bowel in some way.

With his short gut issues in addition to CF, I can't work... although we had planned on me quitting work when he was 9 months old anyway, so I just 'retired' early from my job as a graphic designer. I will say you will get more used to it all and you'll get a routine down that works. And when you think it may be impossible to do it all, it works out much better than you expect.

 

[Mommy2Zeke]

When Zeke is well, we do breathing treatments and CPT 2x a day. 6 a.m. in the morning and 8 p.m. at night. When sick we do treatments 6x a day. Right now he also takes enzymes every 4 hours and imodium every six hours. He's on 16 hours of TPN a day, 24 hours of g-tube feedings, and he is also on IV antibiotics starting today (for a central line infection) Vanco every 8 hours over 2 hours. We've done as many as 2 IV antibiotics every 6 hours at home before, but most of that has been related to his Short Bowel in some way.
<br />
<br />With his short gut issues in addition to CF, I can't work... although we had planned on me quitting work when he was 9 months old anyway, so I just 'retired' early from my job as a graphic designer. I will say you will get more used to it all and you'll get a routine down that works. And when you think it may be impossible to do it all, it works out much better than you expect.

 

[Tylersmom28]

Wow, some of your LO's do ALOT of treatments! I'm so glad I'm not alone in this. I don't know how Tyler is going to like the mask for the Tobi...we haven't started it yet, b/c the pharmacy had to order it so we'll start tonight. Hope it goes well.. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Guess we're just going to have to start getting up early in the morning to do treatments. How long after doing the Tobi do you do CPT's? Right after or do you wait awhile? Thanks for all the advice!

 

[Tylersmom28]

Wow, some of your LO's do ALOT of treatments! I'm so glad I'm not alone in this. I don't know how Tyler is going to like the mask for the Tobi...we haven't started it yet, b/c the pharmacy had to order it so we'll start tonight. Hope it goes well.. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Guess we're just going to have to start getting up early in the morning to do treatments. How long after doing the Tobi do you do CPT's? Right after or do you wait awhile? Thanks for all the advice!

 

[Tylersmom28]

Wow, some of your LO's do ALOT of treatments! I'm so glad I'm not alone in this. I don't know how Tyler is going to like the mask for the Tobi...we haven't started it yet, b/c the pharmacy had to order it so we'll start tonight. Hope it goes well.. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Guess we're just going to have to start getting up early in the morning to do treatments. How long after doing the Tobi do you do CPT's? Right after or do you wait awhile? Thanks for all the advice!

 

[Tylersmom28]

Wow, some of your LO's do ALOT of treatments! I'm so glad I'm not alone in this. I don't know how Tyler is going to like the mask for the Tobi...we haven't started it yet, b/c the pharmacy had to order it so we'll start tonight. Hope it goes well.. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Guess we're just going to have to start getting up early in the morning to do treatments. How long after doing the Tobi do you do CPT's? Right after or do you wait awhile? Thanks for all the advice!

 

[Tylersmom28]

Wow, some of your LO's do ALOT of treatments! I'm so glad I'm not alone in this. I don't know how Tyler is going to like the mask for the Tobi...we haven't started it yet, b/c the pharmacy had to order it so we'll start tonight. Hope it goes well.. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Guess we're just going to have to start getting up early in the morning to do treatments. How long after doing the Tobi do you do CPT's? Right after or do you wait awhile? Thanks for all the advice!

 

[Ratatosk]

You do CPT BEFORE Tobi! It's important that the antibiotic stay in the lungs so it can work. So bronchiodialtor first or with CPT then the antibiotic. And Tobi should only take 20-25 minutes. If it's taking 45-50, like it did when DS was a baby -- then you have a faulty compressor.

Also we held the mask onto DS' face and didn't use the elastic as he didn't like it pulling his hair. Nowdays he could care less. Hands free movement to play video games. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

You do CPT BEFORE Tobi! It's important that the antibiotic stay in the lungs so it can work. So bronchiodialtor first or with CPT then the antibiotic. And Tobi should only take 20-25 minutes. If it's taking 45-50, like it did when DS was a baby -- then you have a faulty compressor.

Also we held the mask onto DS' face and didn't use the elastic as he didn't like it pulling his hair. Nowdays he could care less. Hands free movement to play video games. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

You do CPT BEFORE Tobi! It's important that the antibiotic stay in the lungs so it can work. So bronchiodialtor first or with CPT then the antibiotic. And Tobi should only take 20-25 minutes. If it's taking 45-50, like it did when DS was a baby -- then you have a faulty compressor.

Also we held the mask onto DS' face and didn't use the elastic as he didn't like it pulling his hair. Nowdays he could care less. Hands free movement to play video games. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

You do CPT BEFORE Tobi! It's important that the antibiotic stay in the lungs so it can work. So bronchiodialtor first or with CPT then the antibiotic. And Tobi should only take 20-25 minutes. If it's taking 45-50, like it did when DS was a baby -- then you have a faulty compressor.

Also we held the mask onto DS' face and didn't use the elastic as he didn't like it pulling his hair. Nowdays he could care less. Hands free movement to play video games. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

You do CPT BEFORE Tobi! It's important that the antibiotic stay in the lungs so it can work. So bronchiodialtor first or with CPT then the antibiotic. And Tobi should only take 20-25 minutes. If it's taking 45-50, like it did when DS was a baby -- then you have a faulty compressor.
<br />
<br />Also we held the mask onto DS' face and didn't use the elastic as he didn't like it pulling his hair. Nowdays he could care less. Hands free movement to play video games. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[SARAHSARAH253]

ROUTINE...ROUTINE...Will be your best friend! Our son has been on Pulmozyme since six months. That's when we started running our house on a schedule. Well, at least for treatments...We do them at the exact time everyday. We do 30 mins vest before anything else in the morning. That way it's done! I stay home and have a five month old baby. It's crazy how fast the morning can go by. That's why I made it a rule to get it done before anything. Then at night at 7:00 another 30 min vest/cpt. Followed with Pulmolzyme. On days we no we have allot to do in the evenings we do treatments earlier in the afternoon before hand, so we don't skip them. For my son the nightly routine is great for setting up a nice bed time routine. He knows after treaments we give big hugs, and we put him to bed. He has been having CPT/Vest since he was born so it's how he "knows" we wind down the evening. Friends come over and can't believe what a good boy he is about bed time. But, we have had to do this routine ever since with he was a baby..So it's all he knows!

I wish you lot's of luck....


Sarah

Johnny 2 and a half w/cf.....Bailey 5 months no cf


P.S

We love on DEMAND with Comcast they have all his favorite cartoons...LOL..Tom and Jerry is his new favorite. Back when he was a baby my husband would hold him...and they would battle it out on bad nights. I would sing songs, play toys for him.

We haven't dealt with Tobi/Cipro yet. So, I don't have any advise on how to add it in.

 

[SARAHSARAH253]

ROUTINE...ROUTINE...Will be your best friend! Our son has been on Pulmozyme since six months. That's when we started running our house on a schedule. Well, at least for treatments...We do them at the exact time everyday. We do 30 mins vest before anything else in the morning. That way it's done! I stay home and have a five month old baby. It's crazy how fast the morning can go by. That's why I made it a rule to get it done before anything. Then at night at 7:00 another 30 min vest/cpt. Followed with Pulmolzyme. On days we no we have allot to do in the evenings we do treatments earlier in the afternoon before hand, so we don't skip them. For my son the nightly routine is great for setting up a nice bed time routine. He knows after treaments we give big hugs, and we put him to bed. He has been having CPT/Vest since he was born so it's how he "knows" we wind down the evening. Friends come over and can't believe what a good boy he is about bed time. But, we have had to do this routine ever since with he was a baby..So it's all he knows!

I wish you lot's of luck....


Sarah

Johnny 2 and a half w/cf.....Bailey 5 months no cf


P.S

We love on DEMAND with Comcast they have all his favorite cartoons...LOL..Tom and Jerry is his new favorite. Back when he was a baby my husband would hold him...and they would battle it out on bad nights. I would sing songs, play toys for him.

We haven't dealt with Tobi/Cipro yet. So, I don't have any advise on how to add it in.

 

[SARAHSARAH253]

ROUTINE...ROUTINE...Will be your best friend! Our son has been on Pulmozyme since six months. That's when we started running our house on a schedule. Well, at least for treatments...We do them at the exact time everyday. We do 30 mins vest before anything else in the morning. That way it's done! I stay home and have a five month old baby. It's crazy how fast the morning can go by. That's why I made it a rule to get it done before anything. Then at night at 7:00 another 30 min vest/cpt. Followed with Pulmolzyme. On days we no we have allot to do in the evenings we do treatments earlier in the afternoon before hand, so we don't skip them. For my son the nightly routine is great for setting up a nice bed time routine. He knows after treaments we give big hugs, and we put him to bed. He has been having CPT/Vest since he was born so it's how he "knows" we wind down the evening. Friends come over and can't believe what a good boy he is about bed time. But, we have had to do this routine ever since with he was a baby..So it's all he knows!

I wish you lot's of luck....


Sarah

Johnny 2 and a half w/cf.....Bailey 5 months no cf


P.S

We love on DEMAND with Comcast they have all his favorite cartoons...LOL..Tom and Jerry is his new favorite. Back when he was a baby my husband would hold him...and they would battle it out on bad nights. I would sing songs, play toys for him.

We haven't dealt with Tobi/Cipro yet. So, I don't have any advise on how to add it in.

 

[SARAHSARAH253]

ROUTINE...ROUTINE...Will be your best friend! Our son has been on Pulmozyme since six months. That's when we started running our house on a schedule. Well, at least for treatments...We do them at the exact time everyday. We do 30 mins vest before anything else in the morning. That way it's done! I stay home and have a five month old baby. It's crazy how fast the morning can go by. That's why I made it a rule to get it done before anything. Then at night at 7:00 another 30 min vest/cpt. Followed with Pulmolzyme. On days we no we have allot to do in the evenings we do treatments earlier in the afternoon before hand, so we don't skip them. For my son the nightly routine is great for setting up a nice bed time routine. He knows after treaments we give big hugs, and we put him to bed. He has been having CPT/Vest since he was born so it's how he "knows" we wind down the evening. Friends come over and can't believe what a good boy he is about bed time. But, we have had to do this routine ever since with he was a baby..So it's all he knows!

I wish you lot's of luck....


Sarah

Johnny 2 and a half w/cf.....Bailey 5 months no cf


P.S

We love on DEMAND with Comcast they have all his favorite cartoons...LOL..Tom and Jerry is his new favorite. Back when he was a baby my husband would hold him...and they would battle it out on bad nights. I would sing songs, play toys for him.

We haven't dealt with Tobi/Cipro yet. So, I don't have any advise on how to add it in.

 

[SARAHSARAH253]

ROUTINE...ROUTINE...Will be your best friend! Our son has been on Pulmozyme since six months. That's when we started running our house on a schedule. Well, at least for treatments...We do them at the exact time everyday. We do 30 mins vest before anything else in the morning. That way it's done! I stay home and have a five month old baby. It's crazy how fast the morning can go by. That's why I made it a rule to get it done before anything. Then at night at 7:00 another 30 min vest/cpt. Followed with Pulmolzyme. On days we no we have allot to do in the evenings we do treatments earlier in the afternoon before hand, so we don't skip them. For my son the nightly routine is great for setting up a nice bed time routine. He knows after treaments we give big hugs, and we put him to bed. He has been having CPT/Vest since he was born so it's how he "knows" we wind down the evening. Friends come over and can't believe what a good boy he is about bed time. But, we have had to do this routine ever since with he was a baby..So it's all he knows!
<br />
<br />I wish you lot's of luck....
<br />
<br />
<br />Sarah
<br />
<br />Johnny 2 and a half w/cf.....Bailey 5 months no cf
<br />
<br />
<br />P.S
<br />
<br />We love on DEMAND with Comcast they have all his favorite cartoons...LOL..Tom and Jerry is his new favorite. Back when he was a baby my husband would hold him...and they would battle it out on bad nights. I would sing songs, play toys for him.
<br />
<br />We haven't dealt with Tobi/Cipro yet. So, I don't have any advise on how to add it in.