How...?!? This is really overwhelming.

[JennifersHope]

Sending love, I know you well enough to know you will come through this like a champ. It is hard, I know, I have hard time when I had to do it for myself and I am grown up RN....

Hope things get better fast.

 

[JennifersHope]

Sending love, I know you well enough to know you will come through this like a champ. It is hard, I know, I have hard time when I had to do it for myself and I am grown up RN....
<br />
<br />Hope things get better fast.

 

[giantsfan91]

I'm a home IV veteran (home IV'd at least once a year since 4) that uses the eclipse balls every time so this is probably my specialty when it comes to CF haha. Like zoe4life said some meds (all the ones I've ever been on at least, I know the tobi is like this) have an hour leeway on both ends so if you're doing a 10pm and it's every 8 hours she could be hooked back up at 7am and then the next round can be done at 2pm and then 9 or 10 or even 11pm if you want to do it that late, whichever you prefer for the next morning. You can also take the medicine out the night before to warm it up, it won't go bad at room temp for the 7-8 hours of time. This way the infusion might be a little quicker than if it was cold and you don't have to wake up an extra hour early to take them out. Lastly always have her shower with either a plastic bag covering it or they sell water proof sleeves made to be submerged in water with PICCs. I hope some of this stuff helps at least a little. If I can think of any more I'll post again but I'm sure after 1 or 2 times you'll have the routine down and it'll be easier. And also if you keep home IV's as a routine she's going to eventually learn how to do them by herself with out even bothering you. I give it 3-4 years that age group always wants to stay up at all hours of the night lol.

 

[giantsfan91]

I'm a home IV veteran (home IV'd at least once a year since 4) that uses the eclipse balls every time so this is probably my specialty when it comes to CF haha. Like zoe4life said some meds (all the ones I've ever been on at least, I know the tobi is like this) have an hour leeway on both ends so if you're doing a 10pm and it's every 8 hours she could be hooked back up at 7am and then the next round can be done at 2pm and then 9 or 10 or even 11pm if you want to do it that late, whichever you prefer for the next morning. You can also take the medicine out the night before to warm it up, it won't go bad at room temp for the 7-8 hours of time. This way the infusion might be a little quicker than if it was cold and you don't have to wake up an extra hour early to take them out. Lastly always have her shower with either a plastic bag covering it or they sell water proof sleeves made to be submerged in water with PICCs. I hope some of this stuff helps at least a little. If I can think of any more I'll post again but I'm sure after 1 or 2 times you'll have the routine down and it'll be easier. And also if you keep home IV's as a routine she's going to eventually learn how to do them by herself with out even bothering you. I give it 3-4 years that age group always wants to stay up at all hours of the night lol.

 

[giantsfan91]

I'm a home IV veteran (home IV'd at least once a year since 4) that uses the eclipse balls every time so this is probably my specialty when it comes to CF haha. Like zoe4life said some meds (all the ones I've ever been on at least, I know the tobi is like this) have an hour leeway on both ends so if you're doing a 10pm and it's every 8 hours she could be hooked back up at 7am and then the next round can be done at 2pm and then 9 or 10 or even 11pm if you want to do it that late, whichever you prefer for the next morning. You can also take the medicine out the night before to warm it up, it won't go bad at room temp for the 7-8 hours of time. This way the infusion might be a little quicker than if it was cold and you don't have to wake up an extra hour early to take them out. Lastly always have her shower with either a plastic bag covering it or they sell water proof sleeves made to be submerged in water with PICCs. I hope some of this stuff helps at least a little. If I can think of any more I'll post again but I'm sure after 1 or 2 times you'll have the routine down and it'll be easier. And also if you keep home IV's as a routine she's going to eventually learn how to do them by herself with out even bothering you. I give it 3-4 years that age group always wants to stay up at all hours of the night lol.

 

[Rebjane]

Harriet,

It is hard. Maggie had IV's when she was 2 1/2 and it was hard. She was only on one every 8 hours. It was summer and my son had soccer camp to break up the day.

If you have any friends/family who offer help take it. A play date for the older ones, a friend to keep you older children busy. If there is a way to put the word out; like to a church or community group, sometimes friends offer help, food. People like to help.

I also like to keep myself distracted, get a chick lit book and read, even if it's for 15 minutes to give myself and mind a break(sometimes I would do this while Maggie is in the bath, and i'm sitting in there)

I always keep a running list on the kitchen table of questions for the doc, things that some up so as I think of it in my sleep deprived state, I will not forget.

I hope these IV's do the trick; keep us updated!

 

[Rebjane]

Harriet,

It is hard. Maggie had IV's when she was 2 1/2 and it was hard. She was only on one every 8 hours. It was summer and my son had soccer camp to break up the day.

If you have any friends/family who offer help take it. A play date for the older ones, a friend to keep you older children busy. If there is a way to put the word out; like to a church or community group, sometimes friends offer help, food. People like to help.

I also like to keep myself distracted, get a chick lit book and read, even if it's for 15 minutes to give myself and mind a break(sometimes I would do this while Maggie is in the bath, and i'm sitting in there)

I always keep a running list on the kitchen table of questions for the doc, things that some up so as I think of it in my sleep deprived state, I will not forget.

I hope these IV's do the trick; keep us updated!

 

[Rebjane]

Harriet,
<br />
<br />It is hard. Maggie had IV's when she was 2 1/2 and it was hard. She was only on one every 8 hours. It was summer and my son had soccer camp to break up the day.
<br />
<br />If you have any friends/family who offer help take it. A play date for the older ones, a friend to keep you older children busy. If there is a way to put the word out; like to a church or community group, sometimes friends offer help, food. People like to help.
<br />
<br />I also like to keep myself distracted, get a chick lit book and read, even if it's for 15 minutes to give myself and mind a break(sometimes I would do this while Maggie is in the bath, and i'm sitting in there)
<br />
<br />I always keep a running list on the kitchen table of questions for the doc, things that some up so as I think of it in my sleep deprived state, I will not forget.
<br />
<br />I hope these IV's do the trick; keep us updated!

 

[zoe4life]

To Mike....and Harriett....
Our nurse told us to try Press N Seal to cover Zoe's picc for baths/showers.....it works AMAZING! Zoe hates any kind of tape, so taping the bag around her arm was always a battle taking it off...it hurts! The Press n Seal wraps right around it and peels right off!<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[zoe4life]

To Mike....and Harriett....
Our nurse told us to try Press N Seal to cover Zoe's picc for baths/showers.....it works AMAZING! Zoe hates any kind of tape, so taping the bag around her arm was always a battle taking it off...it hurts! The Press n Seal wraps right around it and peels right off!<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[zoe4life]

To Mike....and Harriett....
<br />Our nurse told us to try Press N Seal to cover Zoe's picc for baths/showers.....it works AMAZING! Zoe hates any kind of tape, so taping the bag around her arm was always a battle taking it off...it hurts! The Press n Seal wraps right around it and peels right off!<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[hmw]

Our nurse recommended the Press-n-Seal as well... we were told no baths for Emily but showers were fine, and that the Press-n-Seal worked as well as taping something over it to keep it dry. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

Our nurse recommended the Press-n-Seal as well... we were told no baths for Emily but showers were fine, and that the Press-n-Seal worked as well as taping something over it to keep it dry. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

Our nurse recommended the Press-n-Seal as well... we were told no baths for Emily but showers were fine, and that the Press-n-Seal worked as well as taping something over it to keep it dry. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[cf4life]

Just wanted to comment that the infusion time for Ceftazidine seems really long to me, but maybe that is due to her age/dose, etc. For me in hospital they infuse ceftazidine in 15 minutes, and at home they tell me to do it over 5 minutes. My does is usually 2 grams. Anyway, sounds like you are getting the hang of it. Glad you are lucky to get Q8 antibiotics. I now get stuck with Zosyn which is every 6 hours and the schedule wipes me out after a few days.

 

[cf4life]

Just wanted to comment that the infusion time for Ceftazidine seems really long to me, but maybe that is due to her age/dose, etc. For me in hospital they infuse ceftazidine in 15 minutes, and at home they tell me to do it over 5 minutes. My does is usually 2 grams. Anyway, sounds like you are getting the hang of it. Glad you are lucky to get Q8 antibiotics. I now get stuck with Zosyn which is every 6 hours and the schedule wipes me out after a few days.

 

[cf4life]

Just wanted to comment that the infusion time for Ceftazidine seems really long to me, but maybe that is due to her age/dose, etc. For me in hospital they infuse ceftazidine in 15 minutes, and at home they tell me to do it over 5 minutes. My does is usually 2 grams. Anyway, sounds like you are getting the hang of it. Glad you are lucky to get Q8 antibiotics. I now get stuck with Zosyn which is every 6 hours and the schedule wipes me out after a few days.

 

[hmw]

It did infuse in the hospital with the syringe/pump faster than it is at home. The eclipse balls seem to take longer.

eta> she is getting 1,500mg of the ceftazidine and 105mg of tobra~ they had to nudge that one up over the typical dose for weight to get her levels right.

 

[hmw]

It did infuse in the hospital with the syringe/pump faster than it is at home. The eclipse balls seem to take longer.

eta> she is getting 1,500mg of the ceftazidine and 105mg of tobra~ they had to nudge that one up over the typical dose for weight to get her levels right.

 

[hmw]

It did infuse in the hospital with the syringe/pump faster than it is at home. The eclipse balls seem to take longer.
<br />
<br />eta> she is getting 1,500mg of the ceftazidine and 105mg of tobra~ they had to nudge that one up over the typical dose for weight to get her levels right.