Practical Activities and Home IV's

J

jena

New member
OK, so I may be putting the cart in front of the horse here. There is a very real possibility that my son will be hospitialized for a tune up. As a first timer with this procedure I have a few concerns. OK, a lot of concerns but there are 2 primary questions I could use some help with regarding HOME IV's.
1. How are they administered (is there a port, a line, where is it) and typically how often do they get the IV fluids??? He would be home just before his birthday and we are renting a bounce house (he is THRILLED about this). But I am wondering.... is he going to be ok bouncing around in there. Would it hurt the IV site being jiggled around or is it in there pretty securely? This is important as I may need to refigure the timing on all of this.
2. The doctor said that some kids still go to school while on home IV's. Some input on this would be great. I have no clue if this is practical or not.
I appreciate your help!!!

Darla

Oh, and if some background information helps. He is 6 years old (turning seven), diagnosed age 3. Just recently cultured PA, went on TOBI (awaiting followup culture results), PFTs dropping (88 to 81), starting another round of TOBI/Cipro today. And he's on the usual course of meds/treatments (creon, pulmozyme, HTS, Alb, prevacid, vest 2x a day but now bumped up to 3).
 
J

jena

New member
OK, so I may be putting the cart in front of the horse here. There is a very real possibility that my son will be hospitialized for a tune up. As a first timer with this procedure I have a few concerns. OK, a lot of concerns but there are 2 primary questions I could use some help with regarding HOME IV's.
1. How are they administered (is there a port, a line, where is it) and typically how often do they get the IV fluids??? He would be home just before his birthday and we are renting a bounce house (he is THRILLED about this). But I am wondering.... is he going to be ok bouncing around in there. Would it hurt the IV site being jiggled around or is it in there pretty securely? This is important as I may need to refigure the timing on all of this.
2. The doctor said that some kids still go to school while on home IV's. Some input on this would be great. I have no clue if this is practical or not.
I appreciate your help!!!

Darla

Oh, and if some background information helps. He is 6 years old (turning seven), diagnosed age 3. Just recently cultured PA, went on TOBI (awaiting followup culture results), PFTs dropping (88 to 81), starting another round of TOBI/Cipro today. And he's on the usual course of meds/treatments (creon, pulmozyme, HTS, Alb, prevacid, vest 2x a day but now bumped up to 3).
 
J

jena

New member
OK, so I may be putting the cart in front of the horse here. There is a very real possibility that my son will be hospitialized for a tune up. As a first timer with this procedure I have a few concerns. OK, a lot of concerns but there are 2 primary questions I could use some help with regarding HOME IV's.
1. How are they administered (is there a port, a line, where is it) and typically how often do they get the IV fluids??? He would be home just before his birthday and we are renting a bounce house (he is THRILLED about this). But I am wondering.... is he going to be ok bouncing around in there. Would it hurt the IV site being jiggled around or is it in there pretty securely? This is important as I may need to refigure the timing on all of this.
2. The doctor said that some kids still go to school while on home IV's. Some input on this would be great. I have no clue if this is practical or not.
I appreciate your help!!!

Darla

Oh, and if some background information helps. He is 6 years old (turning seven), diagnosed age 3. Just recently cultured PA, went on TOBI (awaiting followup culture results), PFTs dropping (88 to 81), starting another round of TOBI/Cipro today. And he's on the usual course of meds/treatments (creon, pulmozyme, HTS, Alb, prevacid, vest 2x a day but now bumped up to 3).
 
J

jena

New member
OK, so I may be putting the cart in front of the horse here. There is a very real possibility that my son will be hospitialized for a tune up. As a first timer with this procedure I have a few concerns. OK, a lot of concerns but there are 2 primary questions I could use some help with regarding HOME IV's.
1. How are they administered (is there a port, a line, where is it) and typically how often do they get the IV fluids??? He would be home just before his birthday and we are renting a bounce house (he is THRILLED about this). But I am wondering.... is he going to be ok bouncing around in there. Would it hurt the IV site being jiggled around or is it in there pretty securely? This is important as I may need to refigure the timing on all of this.
2. The doctor said that some kids still go to school while on home IV's. Some input on this would be great. I have no clue if this is practical or not.
I appreciate your help!!!

Darla

Oh, and if some background information helps. He is 6 years old (turning seven), diagnosed age 3. Just recently cultured PA, went on TOBI (awaiting followup culture results), PFTs dropping (88 to 81), starting another round of TOBI/Cipro today. And he's on the usual course of meds/treatments (creon, pulmozyme, HTS, Alb, prevacid, vest 2x a day but now bumped up to 3).
 
J

jena

New member
OK, so I may be putting the cart in front of the horse here. There is a very real possibility that my son will be hospitialized for a tune up. As a first timer with this procedure I have a few concerns. OK, a lot of concerns but there are 2 primary questions I could use some help with regarding HOME IV's.
1. How are they administered (is there a port, a line, where is it) and typically how often do they get the IV fluids??? He would be home just before his birthday and we are renting a bounce house (he is THRILLED about this). But I am wondering.... is he going to be ok bouncing around in there. Would it hurt the IV site being jiggled around or is it in there pretty securely? This is important as I may need to refigure the timing on all of this.
2. The doctor said that some kids still go to school while on home IV's. Some input on this would be great. I have no clue if this is practical or not.
I appreciate your help!!!

Darla

Oh, and if some background information helps. He is 6 years old (turning seven), diagnosed age 3. Just recently cultured PA, went on TOBI (awaiting followup culture results), PFTs dropping (88 to 81), starting another round of TOBI/Cipro today. And he's on the usual course of meds/treatments (creon, pulmozyme, HTS, Alb, prevacid, vest 2x a day but now bumped up to 3).
 
A

AnD

New member
We are renting a bounce house this year for my daughter's (no cf) birthday too in a week lol- sorry, OT <img src="i/expressions/face-icon-small-wink.gif" border="0">

I hate to say it, but I would think that the bounce house might not be a good thing for him with IV's - he might land on the iv site if he has a regular one ( usually in the hand or arm), and mess it up, or if he has a PICC line (basically, a long iv that starts in the arm/upper arm and goes to the heart and can last for several weeks- not as scary as it sounds <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) it can mess with the placement if he is jumping and landing, etc. around like that. You are supposed to try to take it easy while you are on the ivs (can be hard to do with a 6 year old! <img src="i/expressions/face-icon-small-wink.gif" border="0"> ), - they can be kinda hard on the system so resting is a good thing. And sometimes with the iv meds, you can get sick ( throwing up, etc.) if you are running around during or for a while after taking them (my nephew did this at a party at his house once).

Maybe you could move his party up or off a little while if it comes to that?

Most iv meds that they send you home on are done every 8 hours or every 12. It just depends on the med.

I hope some of this helps, and I hope he is doing better with this round of Tobi/Cipro, and maybe he won't need the iv's at his birthday!
 
A

AnD

New member
We are renting a bounce house this year for my daughter's (no cf) birthday too in a week lol- sorry, OT <img src="i/expressions/face-icon-small-wink.gif" border="0">

I hate to say it, but I would think that the bounce house might not be a good thing for him with IV's - he might land on the iv site if he has a regular one ( usually in the hand or arm), and mess it up, or if he has a PICC line (basically, a long iv that starts in the arm/upper arm and goes to the heart and can last for several weeks- not as scary as it sounds <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) it can mess with the placement if he is jumping and landing, etc. around like that. You are supposed to try to take it easy while you are on the ivs (can be hard to do with a 6 year old! <img src="i/expressions/face-icon-small-wink.gif" border="0"> ), - they can be kinda hard on the system so resting is a good thing. And sometimes with the iv meds, you can get sick ( throwing up, etc.) if you are running around during or for a while after taking them (my nephew did this at a party at his house once).

Maybe you could move his party up or off a little while if it comes to that?

Most iv meds that they send you home on are done every 8 hours or every 12. It just depends on the med.

I hope some of this helps, and I hope he is doing better with this round of Tobi/Cipro, and maybe he won't need the iv's at his birthday!
 
A

AnD

New member
We are renting a bounce house this year for my daughter's (no cf) birthday too in a week lol- sorry, OT <img src="i/expressions/face-icon-small-wink.gif" border="0">

I hate to say it, but I would think that the bounce house might not be a good thing for him with IV's - he might land on the iv site if he has a regular one ( usually in the hand or arm), and mess it up, or if he has a PICC line (basically, a long iv that starts in the arm/upper arm and goes to the heart and can last for several weeks- not as scary as it sounds <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) it can mess with the placement if he is jumping and landing, etc. around like that. You are supposed to try to take it easy while you are on the ivs (can be hard to do with a 6 year old! <img src="i/expressions/face-icon-small-wink.gif" border="0"> ), - they can be kinda hard on the system so resting is a good thing. And sometimes with the iv meds, you can get sick ( throwing up, etc.) if you are running around during or for a while after taking them (my nephew did this at a party at his house once).

Maybe you could move his party up or off a little while if it comes to that?

Most iv meds that they send you home on are done every 8 hours or every 12. It just depends on the med.

I hope some of this helps, and I hope he is doing better with this round of Tobi/Cipro, and maybe he won't need the iv's at his birthday!
 
A

AnD

New member
We are renting a bounce house this year for my daughter's (no cf) birthday too in a week lol- sorry, OT <img src="i/expressions/face-icon-small-wink.gif" border="0">

I hate to say it, but I would think that the bounce house might not be a good thing for him with IV's - he might land on the iv site if he has a regular one ( usually in the hand or arm), and mess it up, or if he has a PICC line (basically, a long iv that starts in the arm/upper arm and goes to the heart and can last for several weeks- not as scary as it sounds <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) it can mess with the placement if he is jumping and landing, etc. around like that. You are supposed to try to take it easy while you are on the ivs (can be hard to do with a 6 year old! <img src="i/expressions/face-icon-small-wink.gif" border="0"> ), - they can be kinda hard on the system so resting is a good thing. And sometimes with the iv meds, you can get sick ( throwing up, etc.) if you are running around during or for a while after taking them (my nephew did this at a party at his house once).

Maybe you could move his party up or off a little while if it comes to that?

Most iv meds that they send you home on are done every 8 hours or every 12. It just depends on the med.

I hope some of this helps, and I hope he is doing better with this round of Tobi/Cipro, and maybe he won't need the iv's at his birthday!
 
A

AnD

New member
We are renting a bounce house this year for my daughter's (no cf) birthday too in a week lol- sorry, OT <img src="i/expressions/face-icon-small-wink.gif" border="0">

I hate to say it, but I would think that the bounce house might not be a good thing for him with IV's - he might land on the iv site if he has a regular one ( usually in the hand or arm), and mess it up, or if he has a PICC line (basically, a long iv that starts in the arm/upper arm and goes to the heart and can last for several weeks- not as scary as it sounds <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) it can mess with the placement if he is jumping and landing, etc. around like that. You are supposed to try to take it easy while you are on the ivs (can be hard to do with a 6 year old! <img src="i/expressions/face-icon-small-wink.gif" border="0"> ), - they can be kinda hard on the system so resting is a good thing. And sometimes with the iv meds, you can get sick ( throwing up, etc.) if you are running around during or for a while after taking them (my nephew did this at a party at his house once).

Maybe you could move his party up or off a little while if it comes to that?

Most iv meds that they send you home on are done every 8 hours or every 12. It just depends on the med.

I hope some of this helps, and I hope he is doing better with this round of Tobi/Cipro, and maybe he won't need the iv's at his birthday!
 
R

Rebjane

Super Moderator
My daughter had home IV's once so far when she was 2. She had a PICC line placed and it was in for a couple weeks. Hopefully , your son won't need the home IV's but I've learned with CF sometimes you need to get creative and flexible. I agree the bounce house is not a good idea with a PICC line, I'ld be afraid it would get pulled out. Maybe reschedule the bounce house rental for before or after home IV's if this is the case. My daughter had her IV's done every 8 hours and because of the type of med it was she was connected to the med for 2 hours at a time. She did go to play group and friends' houses with me. Her docs concern were making sure her friends were not sick(since we were working so hard to get her better) and kids pulling on the PICC line. having the Bounce house after he gets better maybe would be something to look foward to?
 
R

Rebjane

Super Moderator
My daughter had home IV's once so far when she was 2. She had a PICC line placed and it was in for a couple weeks. Hopefully , your son won't need the home IV's but I've learned with CF sometimes you need to get creative and flexible. I agree the bounce house is not a good idea with a PICC line, I'ld be afraid it would get pulled out. Maybe reschedule the bounce house rental for before or after home IV's if this is the case. My daughter had her IV's done every 8 hours and because of the type of med it was she was connected to the med for 2 hours at a time. She did go to play group and friends' houses with me. Her docs concern were making sure her friends were not sick(since we were working so hard to get her better) and kids pulling on the PICC line. having the Bounce house after he gets better maybe would be something to look foward to?
 
R

Rebjane

Super Moderator
My daughter had home IV's once so far when she was 2. She had a PICC line placed and it was in for a couple weeks. Hopefully , your son won't need the home IV's but I've learned with CF sometimes you need to get creative and flexible. I agree the bounce house is not a good idea with a PICC line, I'ld be afraid it would get pulled out. Maybe reschedule the bounce house rental for before or after home IV's if this is the case. My daughter had her IV's done every 8 hours and because of the type of med it was she was connected to the med for 2 hours at a time. She did go to play group and friends' houses with me. Her docs concern were making sure her friends were not sick(since we were working so hard to get her better) and kids pulling on the PICC line. having the Bounce house after he gets better maybe would be something to look foward to?
 
R

Rebjane

Super Moderator
My daughter had home IV's once so far when she was 2. She had a PICC line placed and it was in for a couple weeks. Hopefully , your son won't need the home IV's but I've learned with CF sometimes you need to get creative and flexible. I agree the bounce house is not a good idea with a PICC line, I'ld be afraid it would get pulled out. Maybe reschedule the bounce house rental for before or after home IV's if this is the case. My daughter had her IV's done every 8 hours and because of the type of med it was she was connected to the med for 2 hours at a time. She did go to play group and friends' houses with me. Her docs concern were making sure her friends were not sick(since we were working so hard to get her better) and kids pulling on the PICC line. having the Bounce house after he gets better maybe would be something to look foward to?
 
R

Rebjane

Super Moderator
My daughter had home IV's once so far when she was 2. She had a PICC line placed and it was in for a couple weeks. Hopefully , your son won't need the home IV's but I've learned with CF sometimes you need to get creative and flexible. I agree the bounce house is not a good idea with a PICC line, I'ld be afraid it would get pulled out. Maybe reschedule the bounce house rental for before or after home IV's if this is the case. My daughter had her IV's done every 8 hours and because of the type of med it was she was connected to the med for 2 hours at a time. She did go to play group and friends' houses with me. Her docs concern were making sure her friends were not sick(since we were working so hard to get her better) and kids pulling on the PICC line. having the Bounce house after he gets better maybe would be something to look foward to?
 
F

folione

New member
PICC lines are the most likely way they would do home IV treatments. You can google "picc line" and get good info and pictures of what it's all about. My 4 year old did a round at home this summer; we vastly prefer home IV to hospital time even though it does mean a schedule built around administering the medicine at 6am, 2pm, and 10pm each lasting 1-2 hours. Home IV medicine takes longer to administer than with a hospital grade line/pump just because of limitations of the technology. For example, this past time the Ceftaz took 5-10 minutes in the hospital but ran for a half-hour at home.

PICC lines are pretty durable and you wrap them up with an ace banadage to keep clean and prevent getting snagged - but avoiding a mosh-pit is probably a good idea.
 
F

folione

New member
PICC lines are the most likely way they would do home IV treatments. You can google "picc line" and get good info and pictures of what it's all about. My 4 year old did a round at home this summer; we vastly prefer home IV to hospital time even though it does mean a schedule built around administering the medicine at 6am, 2pm, and 10pm each lasting 1-2 hours. Home IV medicine takes longer to administer than with a hospital grade line/pump just because of limitations of the technology. For example, this past time the Ceftaz took 5-10 minutes in the hospital but ran for a half-hour at home.

PICC lines are pretty durable and you wrap them up with an ace banadage to keep clean and prevent getting snagged - but avoiding a mosh-pit is probably a good idea.
 
F

folione

New member
PICC lines are the most likely way they would do home IV treatments. You can google "picc line" and get good info and pictures of what it's all about. My 4 year old did a round at home this summer; we vastly prefer home IV to hospital time even though it does mean a schedule built around administering the medicine at 6am, 2pm, and 10pm each lasting 1-2 hours. Home IV medicine takes longer to administer than with a hospital grade line/pump just because of limitations of the technology. For example, this past time the Ceftaz took 5-10 minutes in the hospital but ran for a half-hour at home.

PICC lines are pretty durable and you wrap them up with an ace banadage to keep clean and prevent getting snagged - but avoiding a mosh-pit is probably a good idea.
 
F

folione

New member
PICC lines are the most likely way they would do home IV treatments. You can google "picc line" and get good info and pictures of what it's all about. My 4 year old did a round at home this summer; we vastly prefer home IV to hospital time even though it does mean a schedule built around administering the medicine at 6am, 2pm, and 10pm each lasting 1-2 hours. Home IV medicine takes longer to administer than with a hospital grade line/pump just because of limitations of the technology. For example, this past time the Ceftaz took 5-10 minutes in the hospital but ran for a half-hour at home.

PICC lines are pretty durable and you wrap them up with an ace banadage to keep clean and prevent getting snagged - but avoiding a mosh-pit is probably a good idea.
 
F

folione

New member
PICC lines are the most likely way they would do home IV treatments. You can google "picc line" and get good info and pictures of what it's all about. My 4 year old did a round at home this summer; we vastly prefer home IV to hospital time even though it does mean a schedule built around administering the medicine at 6am, 2pm, and 10pm each lasting 1-2 hours. Home IV medicine takes longer to administer than with a hospital grade line/pump just because of limitations of the technology. For example, this past time the Ceftaz took 5-10 minutes in the hospital but ran for a half-hour at home.

PICC lines are pretty durable and you wrap them up with an ace banadage to keep clean and prevent getting snagged - but avoiding a mosh-pit is probably a good idea.
 
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