Getting the routine down

[ddawes27]

My son (4yrs) was diagnosed at the end of November, due to recurrent sinus infections. He had the "roto router" sinus surgery 2 weeks ago. He also spent 8 days in the hospital on IV antibiotics, and I am on the second week of the IV's at home..
He is unpredicatable at what time he will fall asleep. My question is.........I f he falls asleep before 7:30 for the night........Is it really important to wake him for his vest and Neb??.........I have done so..........It is 30 mins of pure cranky 4 year old hell!

 

[ddawes27]

My son (4yrs) was diagnosed at the end of November, due to recurrent sinus infections. He had the "roto router" sinus surgery 2 weeks ago. He also spent 8 days in the hospital on IV antibiotics, and I am on the second week of the IV's at home..
He is unpredicatable at what time he will fall asleep. My question is.........I f he falls asleep before 7:30 for the night........Is it really important to wake him for his vest and Neb??.........I have done so..........It is 30 mins of pure cranky 4 year old hell!

 

[ddawes27]

My son (4yrs) was diagnosed at the end of November, due to recurrent sinus infections. He had the "roto router" sinus surgery 2 weeks ago. He also spent 8 days in the hospital on IV antibiotics, and I am on the second week of the IV's at home..
He is unpredicatable at what time he will fall asleep. My question is.........I f he falls asleep before 7:30 for the night........Is it really important to wake him for his vest and Neb??.........I have done so..........It is 30 mins of pure cranky 4 year old hell!

 

[Ratatosk]

It's important to have good lung care. So we do CPT/Vest 3 times a day. Sometimes 4 if need be. If DS is sleeping then we still do the vest of chest physiotherapy. Usually sleeps thru it.

 

[Ratatosk]

It's important to have good lung care. So we do CPT/Vest 3 times a day. Sometimes 4 if need be. If DS is sleeping then we still do the vest of chest physiotherapy. Usually sleeps thru it.

 

[Ratatosk]

It's important to have good lung care. So we do CPT/Vest 3 times a day. Sometimes 4 if need be. If DS is sleeping then we still do the vest of chest physiotherapy. Usually sleeps thru it.

 

[amysmom]

I think that establishing the routine is almost more important than the idea of missing a day here or there. My daughter, Amy, is 25 years old (diagnosed at 6 months) and looking back I can see how crucial sticking to treatments twice a day (almost no matter what) was. When there isn't an option, I think children adapt and get so used to it that it's a permanent part of their life. I think insisting on treatments every day has contributed to Amy's good health and being hospitalized so few times. Hope this helps! I know it's hard.

 

[amysmom]

I think that establishing the routine is almost more important than the idea of missing a day here or there. My daughter, Amy, is 25 years old (diagnosed at 6 months) and looking back I can see how crucial sticking to treatments twice a day (almost no matter what) was. When there isn't an option, I think children adapt and get so used to it that it's a permanent part of their life. I think insisting on treatments every day has contributed to Amy's good health and being hospitalized so few times. Hope this helps! I know it's hard.

 

[amysmom]

I think that establishing the routine is almost more important than the idea of missing a day here or there. My daughter, Amy, is 25 years old (diagnosed at 6 months) and looking back I can see how crucial sticking to treatments twice a day (almost no matter what) was. When there isn't an option, I think children adapt and get so used to it that it's a permanent part of their life. I think insisting on treatments every day has contributed to Amy's good health and being hospitalized so few times. Hope this helps! I know it's hard.

 

[Mommafirst]

I think with any kid, a routine is important -- lets them know what to expect and overall gives a smoother day. But with CF, the routine is everything. And some days its downright hard!! My daughter had the stomach flu this week and couldn't keep any food down and was just miserable, so keeping up with meds, nebs, and pt was really really tough. We did the best we could each day and if we missed a stroke got right back into the routine. My daughter is still little and we are just figuring it all out, but I do believe that finding a way to get a routine down will be best in the long run.

 

[Mommafirst]

I think with any kid, a routine is important -- lets them know what to expect and overall gives a smoother day. But with CF, the routine is everything. And some days its downright hard!! My daughter had the stomach flu this week and couldn't keep any food down and was just miserable, so keeping up with meds, nebs, and pt was really really tough. We did the best we could each day and if we missed a stroke got right back into the routine. My daughter is still little and we are just figuring it all out, but I do believe that finding a way to get a routine down will be best in the long run.

 

[Mommafirst]

I think with any kid, a routine is important -- lets them know what to expect and overall gives a smoother day. But with CF, the routine is everything. And some days its downright hard!! My daughter had the stomach flu this week and couldn't keep any food down and was just miserable, so keeping up with meds, nebs, and pt was really really tough. We did the best we could each day and if we missed a stroke got right back into the routine. My daughter is still little and we are just figuring it all out, but I do believe that finding a way to get a routine down will be best in the long run.

 

[JazzysMom]

Have you tried just doing the nebs & vest WITHOUT waking him? I mean some kids can sleep thru it once you get the vest on him....just a thought!

 

[JazzysMom]

Have you tried just doing the nebs & vest WITHOUT waking him? I mean some kids can sleep thru it once you get the vest on him....just a thought!

 

[JazzysMom]

Have you tried just doing the nebs & vest WITHOUT waking him? I mean some kids can sleep thru it once you get the vest on him....just a thought!

 

[usedtobeinca]

Sticking to the routine is hugely important, but can be a bear. My son's CF treatments and post-surgical care (for ileosomy - incl. bag changes, decompressions, NG tube, etc.) basically dominated our lives for 2 months until his re-connect surgery in August. We pretty much went into "machine" mode, went to another place in our minds and got it done - with baby quite upset at times. The result was that the healing time was shorter than it could've been - and now we look back and see that it was for the best - though unpleasant. Hang in there and look at it as your mission to be accomplished. Write up a schedule to run by if needed - we used a printed spreadsheet until it became second nature. You'll get through it.

 

[usedtobeinca]

Sticking to the routine is hugely important, but can be a bear. My son's CF treatments and post-surgical care (for ileosomy - incl. bag changes, decompressions, NG tube, etc.) basically dominated our lives for 2 months until his re-connect surgery in August. We pretty much went into "machine" mode, went to another place in our minds and got it done - with baby quite upset at times. The result was that the healing time was shorter than it could've been - and now we look back and see that it was for the best - though unpleasant. Hang in there and look at it as your mission to be accomplished. Write up a schedule to run by if needed - we used a printed spreadsheet until it became second nature. You'll get through it.

 

[usedtobeinca]

Sticking to the routine is hugely important, but can be a bear. My son's CF treatments and post-surgical care (for ileosomy - incl. bag changes, decompressions, NG tube, etc.) basically dominated our lives for 2 months until his re-connect surgery in August. We pretty much went into "machine" mode, went to another place in our minds and got it done - with baby quite upset at times. The result was that the healing time was shorter than it could've been - and now we look back and see that it was for the best - though unpleasant. Hang in there and look at it as your mission to be accomplished. Write up a schedule to run by if needed - we used a printed spreadsheet until it became second nature. You'll get through it.