Ports and doing IV meds at home

[Mar]

My daughter has a port in her arm and the doctors in our hospital are reluctant to let her got home to finish her antibiotic IV treatment at home, unlike before when she had a pic line. The nurses don't even want to unhook her line for the whole time she is on them, (last time it was four weeks!), because they are worried about infection and maybe something clotting up. Does anyone out there have information about this subject? One nurse said she may be able to do it by using more heparin for the SASH. Would love to hear from you,
Aloha

 

[Mar]

My daughter has a port in her arm and the doctors in our hospital are reluctant to let her got home to finish her antibiotic IV treatment at home, unlike before when she had a pic line. The nurses don't even want to unhook her line for the whole time she is on them, (last time it was four weeks!), because they are worried about infection and maybe something clotting up. Does anyone out there have information about this subject? One nurse said she may be able to do it by using more heparin for the SASH. Would love to hear from you,
Aloha

 

[Mar]

My daughter has a port in her arm and the doctors in our hospital are reluctant to let her got home to finish her antibiotic IV treatment at home, unlike before when she had a pic line. The nurses don't even want to unhook her line for the whole time she is on them, (last time it was four weeks!), because they are worried about infection and maybe something clotting up. Does anyone out there have information about this subject? One nurse said she may be able to do it by using more heparin for the SASH. Would love to hear from you,
<br />Aloha

 

[mag6125]

I have a port and no matter how long I'm on ivs it has to be deaccesed and then reaccessed once a week. They won't even let me go ten days with the same needle. I do all my ivs at home

 

[mag6125]

I have a port and no matter how long I'm on ivs it has to be deaccesed and then reaccessed once a week. They won't even let me go ten days with the same needle. I do all my ivs at home

 

[mag6125]

I have a port and no matter how long I'm on ivs it has to be deaccesed and then reaccessed once a week. They won't even let me go ten days with the same needle. I do all my ivs at home

 

[pipersmom]

Unless she's had trouble with her port, that sounds really odd to me. Piper (9) has been using a port for three yrs, and we frequently start IVs in the hospital, and then come home on them. She also gets hooked and unhooked every time she has more than an hr between IVs so she's free to move around. The only exception is at night, and that's only because she vests all night, and it would be a pita to stop and re-start it several times to hook/unhook. Also, if they are leaving her accessed with the same needle for 4 weeks straight, I would say that's more apt to cause infection than having the needle changed the way it's supposed to be, once every 7 days as Mag mentioned. For Piper, we use 10 of hep in between IVs, and flush her off with 100 when her course is done, and during her monthly flushes. Not sure where you are, but I'd definitely get a second opinion, to say the least.

 

[pipersmom]

Unless she's had trouble with her port, that sounds really odd to me. Piper (9) has been using a port for three yrs, and we frequently start IVs in the hospital, and then come home on them. She also gets hooked and unhooked every time she has more than an hr between IVs so she's free to move around. The only exception is at night, and that's only because she vests all night, and it would be a pita to stop and re-start it several times to hook/unhook. Also, if they are leaving her accessed with the same needle for 4 weeks straight, I would say that's more apt to cause infection than having the needle changed the way it's supposed to be, once every 7 days as Mag mentioned. For Piper, we use 10 of hep in between IVs, and flush her off with 100 when her course is done, and during her monthly flushes. Not sure where you are, but I'd definitely get a second opinion, to say the least.

 

[pipersmom]

Unless she's had trouble with her port, that sounds really odd to me. Piper (9) has been using a port for three yrs, and we frequently start IVs in the hospital, and then come home on them. She also gets hooked and unhooked every time she has more than an hr between IVs so she's free to move around. The only exception is at night, and that's only because she vests all night, and it would be a pita to stop and re-start it several times to hook/unhook. Also, if they are leaving her accessed with the same needle for 4 weeks straight, I would say that's more apt to cause infection than having the needle changed the way it's supposed to be, once every 7 days as Mag mentioned. For Piper, we use 10 of hep in between IVs, and flush her off with 100 when her course is done, and during her monthly flushes. Not sure where you are, but I'd definitely get a second opinion, to say the least.

 

[Treewife]

I'm confused. Our docs are trying to sell us on the Port by saying "She won't have to get stuck for IV or meds or labs. We will just reaccess each time we need it but otherwise it is jsut there."
If that's the case then how can you NOT unhook it? Isn't that the whole point of the port - not needing to stick the kids and also jsut not using it when you don't need to?

 

[Treewife]

I'm confused. Our docs are trying to sell us on the Port by saying "She won't have to get stuck for IV or meds or labs. We will just reaccess each time we need it but otherwise it is jsut there."
If that's the case then how can you NOT unhook it? Isn't that the whole point of the port - not needing to stick the kids and also jsut not using it when you don't need to?

 

[Treewife]

I'm confused. Our docs are trying to sell us on the Port by saying "She won't have to get stuck for IV or meds or labs. We will just reaccess each time we need it but otherwise it is jsut there."
<br />If that's the case then how can you NOT unhook it? Isn't that the whole point of the port - not needing to stick the kids and also jsut not using it when you don't need to?

 

[pipersmom]

When you access a port you are sticking a needle into it. The needle has to be changed once weekly while someone is on IV meds, and flushed once a month. The difference is the stability (the line itself is permanent, and only once have we had to change a needle before the 7 days is up), and the lack of pain. Generally speaking, most people will say that getting their port accessed feels, at worse, like a beesting. You can also use emla cream to numb the port before it's accessed to lessen even that. Accessing Piper takes less than a minute. Now, she has a needle phobia, and Asperger's, and it is still 100% better than when she needed regular IVs. There are no worries about finding a vein, getting blood draws, or the IV blowing out. I would highly recommend it to anyone who needs IV meds more than once or twice a year.

 

[pipersmom]

When you access a port you are sticking a needle into it. The needle has to be changed once weekly while someone is on IV meds, and flushed once a month. The difference is the stability (the line itself is permanent, and only once have we had to change a needle before the 7 days is up), and the lack of pain. Generally speaking, most people will say that getting their port accessed feels, at worse, like a beesting. You can also use emla cream to numb the port before it's accessed to lessen even that. Accessing Piper takes less than a minute. Now, she has a needle phobia, and Asperger's, and it is still 100% better than when she needed regular IVs. There are no worries about finding a vein, getting blood draws, or the IV blowing out. I would highly recommend it to anyone who needs IV meds more than once or twice a year.

 

[pipersmom]

When you access a port you are sticking a needle into it. The needle has to be changed once weekly while someone is on IV meds, and flushed once a month. The difference is the stability (the line itself is permanent, and only once have we had to change a needle before the 7 days is up), and the lack of pain. Generally speaking, most people will say that getting their port accessed feels, at worse, like a beesting. You can also use emla cream to numb the port before it's accessed to lessen even that. Accessing Piper takes less than a minute. Now, she has a needle phobia, and Asperger's, and it is still 100% better than when she needed regular IVs. There are no worries about finding a vein, getting blood draws, or the IV blowing out. I would highly recommend it to anyone who needs IV meds more than once or twice a year.

 

[Mar]

Thank you so much mag and pipersmom for your input. That is very helpful because I think she is going to need more antibiotics very soon. It is hard over here because there are very few people with cf in Hawai'i and no centers, (except for military on Oahu). So do you do your own monthly flushes at home as well? They told her she needs to go to the clinic for that, maybe they want to look at the port as well? Aloha

 

[Mar]

Thank you so much mag and pipersmom for your input. That is very helpful because I think she is going to need more antibiotics very soon. It is hard over here because there are very few people with cf in Hawai'i and no centers, (except for military on Oahu). So do you do your own monthly flushes at home as well? They told her she needs to go to the clinic for that, maybe they want to look at the port as well? Aloha

 

[Mar]

Thank you so much mag and pipersmom for your input. That is very helpful because I think she is going to need more antibiotics very soon. It is hard over here because there are very few people with cf in Hawai'i and no centers, (except for military on Oahu). So do you do your own monthly flushes at home as well? They told her she needs to go to the clinic for that, maybe they want to look at the port as well? Aloha

 

[pipersmom]

Mar, I do her flushes myself now. For the first few months, I had a home health nurse come to our house and teach me to do them, and to do the needle changes, etc. Even if you would rather not do it, you should be able to get home health services, check with your Dr and see. Also, not sure if this would help, but another large group with ports is cancer patients. You could ask your Dr/Nurse to check with the closest oncology clinic for the protocol they use for ports.

 

[pipersmom]

Mar, I do her flushes myself now. For the first few months, I had a home health nurse come to our house and teach me to do them, and to do the needle changes, etc. Even if you would rather not do it, you should be able to get home health services, check with your Dr and see. Also, not sure if this would help, but another large group with ports is cancer patients. You could ask your Dr/Nurse to check with the closest oncology clinic for the protocol they use for ports.