Line Care

[Amy Swarbrick]

I already posted this topic as a blog but some people thought it might be good to post as a forum also. So please feel free to share your opinions and what works best for your child.
(old post)
I'm sure everyone has their own methods of caring for their child's line, if they have one, but I just wanted to share this with you. The clinic where Brody gets his transfusions uses Glad press n' seal on some kids instead of tagaderm. We have started using it at home over Brody's broviac. We cover the tube completely and the dressing (tagaderm). It goes on easy and peels off easy. I have to use a fairly large piece and most the time he doesn't like it but it works pretty well besides an occasional leak. Maybe I should be more paranoid about his line but I have to let him enjoy life too. Now he can finally play in the hose and take a shallow bath (no water submersion). Hope all the kiddos are doing well. God bless.

[Svetlana Finley]

Our dr. before she heard about Soliris want to get AVFistula for plasma pheresis, but it will limit Anna in some sports activities. Even right now they still talking about it to get fistula, but Anna doesn't want it and wishing she will be already 12 and get Soliris. Right now about Fistula is up in the air and i personally don't want it right now as Anna's wishes to get back to sports once she will get Soliris.

BR>Lisa Goble said:

Is there any way that plasma pheresis can be done thru an AV Fistula, or does it need to be done with a vas cath? We did our plasma pheresis thru a vas cath in Lyd's chest. It was infected with-in maybe 17? treatments (during initial presentation which was over about a 2 month period) with a bacteria called enterrococcus. The kidney dr., disease specialist, hemotologist, and surgeon couldnt decide what to do about the situation for 3 days. They ended up having to take out since the bacteria was killed in her bloodstream, but still in both lines. So we pulled the line, hoped for the best, and this time her body fought and won.

Are there certain bacterias, that once they are introduced to our bodies, that make us suseptable to getting them again, regardless of how careful we are? What are they?

[Donna Kolp]

Cheryl,
Are you referring to a port-a-cath? Jonathan has had many in the past, and the last one he had to get taken out, (9 years~not recommended!!! as he still has a portion of this in his chest because it snapped at the clavacle) that one was VERY wobbly.....You really needed to hold it down, otherwise it would literally run away from you!! The one he has now, it sticks up a bit on his chest and he happens to have a mole right in the center, and he tells anyone who accesses it to poke right there!! Whatever the case, remember that ports are NOT meant to stay in longer than 5 years, case in point...Jonathan's "left over" one still in his chest.... :)

Cheryl Christine Pallme Biermann said:

Wobby ports. Sometimes ports don't adhere under the skin like they were designed to do, for some reason we have never had a stable port, and we've had four of the over the years. So in case anyone else experiences the hard to stick port, here are some tips we've learned over the years. Lie the patient as flat as possible, Make the port stable by placing two STERILE gloved hands on either side of the port. Have the patient raise the arm on the port side above their head, somehow the muscle from this movement helps stabalize the port. After accessing and getting a return, if it starts to get sluggish or starts and stops, try backing the needle out a little, you may be up against a wall. Try flushing and then go back to trying to draw. If anyone else has any tips, we sure would like to hear them! Thanks!

[Cheryl Biermann]

Yeah Donna, this is the port I was referring too, funny you should mention that, a 17 year old with us was needing another line besides his fistula. They were poking and proding on him and couldn't get any blood. Finally, he says hey why don't we use my port? When the old dialysis crew left apparently the new crew didn't absorb all the information on the kids...his port hadn't been accessed in three years! Yikes!!! Anyway, back to our kids wobbly ports, Nathan's current port is about three years old and we are accessing to refresh heprin every 3 months. I'm not sure why it was so finnicky the last try, maybe it's just a matter of the nurses being rusty and his port being so mobile-you can bet next month when we access it again, I'll be paying close attention! Thanks for the caution.

Donna Kolp said:

Cheryl,
Are you referring to a port-a-cath? Jonathan has had many in the past, and the last one he had to get taken out, (9 years~not recommended!!! as he still has a portion of this in his chest because it snapped at the clavacle) that one was VERY wobbly.....You really needed to hold it down, otherwise it would literally run away from you!! The one he has now, it sticks up a bit on his chest and he happens to have a mole right in the center, and he tells anyone who accesses it to poke right there!! Whatever the case, remember that ports are NOT meant to stay in longer than 5 years, case in point...Jonathan's "left over" one still in his chest.... :)

Cheryl Christine Pallme Biermann said:

Wobby ports. Sometimes ports don't adhere under the skin like they were designed to do, for some reason we have never had a stable port, and we've had four of the over the years. So in case anyone else experiences the hard to stick port, here are some tips we've learned over the years. Lie the patient as flat as possible, Make the port stable by placing two STERILE gloved hands on either side of the port. Have the patient raise the arm on the port side above their head, somehow the muscle from this movement helps stabalize the port. After accessing and getting a return, if it starts to get sluggish or starts and stops, try backing the needle out a little, you may be up against a wall. Try flushing and then go back to trying to draw. If anyone else has any tips, we sure would like to hear them! Thanks!

[Donna Kolp]

Cheryl,

On the ports, I was told that it needed to be flushed with saline and Heparin every month. We are doing Jonathan's plasma treatments during dialysis, using his fistula. Maybe that is why you had some trouble? It's just a thought :)

Cheryl Christine Pallme Biermann said:

Yeah Donna, this is the port I was referring too, funny you should mention that, a 17 year old with us was needing another line besides his fistula. They were poking and proding on him and couldn't get any blood. Finally, he says hey why don't we use my port? When the old dialysis crew left apparently the new crew didn't absorb all the information on the kids...his port hadn't been accessed in three years! Yikes!!! Anyway, back to our kids wobbly ports, Nathan's current port is about three years old and we are accessing to refresh heprin every 3 months. I'm not sure why it was so finnicky the last try, maybe it's just a matter of the nurses being rusty and his port being so mobile-you can bet next month when we access it again, I'll be paying close attention! Thanks for the caution.

Donna Kolp said:

Cheryl,
Are you referring to a port-a-cath? Jonathan has had many in the past, and the last one he had to get taken out, (9 years~not recommended!!! as he still has a portion of this in his chest because it snapped at the clavacle) that one was VERY wobbly.....You really needed to hold it down, otherwise it would literally run away from you!! The one he has now, it sticks up a bit on his chest and he happens to have a mole right in the center, and he tells anyone who accesses it to poke right there!! Whatever the case, remember that ports are NOT meant to stay in longer than 5 years, case in point...Jonathan's "left over" one still in his chest.... :)

Cheryl Christine Pallme Biermann said:

Wobby ports. Sometimes ports don't adhere under the skin like they were designed to do, for some reason we have never had a stable port, and we've had four of the over the years. So in case anyone else experiences the hard to stick port, here are some tips we've learned over the years. Lie the patient as flat as possible, Make the port stable by placing two STERILE gloved hands on either side of the port. Have the patient raise the arm on the port side above their head, somehow the muscle from this movement helps stabalize the port. After accessing and getting a return, if it starts to get sluggish or starts and stops, try backing the needle out a little, you may be up against a wall. Try flushing and then go back to trying to draw. If anyone else has any tips, we sure would like to hear them! Thanks!

[Cheryl Biermann]

thanks Donna, I mention it!

Donna Kolp said:

Cheryl,

On the ports, I was told that it needed to be flushed with saline and Heparin every month. We are doing Jonathan's plasma treatments during dialysis, using his fistula. Maybe that is why you had some trouble? It's just a thought :)

Cheryl Christine Pallme Biermann said:

Yeah Donna, this is the port I was referring too, funny you should mention that, a 17 year old with us was needing another line besides his fistula. They were poking and proding on him and couldn't get any blood. Finally, he says hey why don't we use my port? When the old dialysis crew left apparently the new crew didn't absorb all the information on the kids...his port hadn't been accessed in three years! Yikes!!! Anyway, back to our kids wobbly ports, Nathan's current port is about three years old and we are accessing to refresh heprin every 3 months. I'm not sure why it was so finnicky the last try, maybe it's just a matter of the nurses being rusty and his port being so mobile-you can bet next month when we access it again, I'll be paying close attention! Thanks for the caution.

Donna Kolp said:

Cheryl,
Are you referring to a port-a-cath? Jonathan has had many in the past, and the last one he had to get taken out, (9 years~not recommended!!! as he still has a portion of this in his chest because it snapped at the clavacle) that one was VERY wobbly.....You really needed to hold it down, otherwise it would literally run away from you!! The one he has now, it sticks up a bit on his chest and he happens to have a mole right in the center, and he tells anyone who accesses it to poke right there!! Whatever the case, remember that ports are NOT meant to stay in longer than 5 years, case in point...Jonathan's "left over" one still in his chest.... :)

Cheryl Christine Pallme Biermann said:

Wobby ports. Sometimes ports don't adhere under the skin like they were designed to do, for some reason we have never had a stable port, and we've had four of the over the years. So in case anyone else experiences the hard to stick port, here are some tips we've learned over the years. Lie the patient as flat as possible, Make the port stable by placing two STERILE gloved hands on either side of the port. Have the patient raise the arm on the port side above their head, somehow the muscle from this movement helps stabalize the port. After accessing and getting a return, if it starts to get sluggish or starts and stops, try backing the needle out a little, you may be up against a wall. Try flushing and then go back to trying to draw. If anyone else has any tips, we sure would like to hear them! Thanks!

[Svetlana Finley]

Hi, everyone
I hope everyone doing well.
Anna is doing great with her blood levels. She still has problem with her line area. It has what dr. call heat rash. They want us to leave area open for few days, to let that area dry and healed up, but they also concern she might get infection. FFP people saying some patients just put band-aid on and they are ok.
Any suggestions?

[Grace]

I hope you're family's okay!
Sometimes when the area around my PD catheter is irritated I swich to gauze+paper tape for 24 hours or however long is needed. I find it less irritating and more breathable. Sometimes I try to cover a larger area with gauze so the skin that's usually covered in adhesive gets a rest.
I don't know if it would be appropriate for Anna; use your own best judgement.

Svetlana Finley said:

Hi, everyone
I hope everyone doing well.
Anna is doing great with her blood levels. She still has problem with her line area. It has what dr. call heat rash. They want us to leave area open for few days, to let that area dry and healed up, but they also concern she might get infection. FFP people saying some patients just put band-aid on and they are ok.
Any suggestions?

[Svetlana Finley]

Yes, we did use that, but now it seems that doesn't help... Our regular dr is not in town and other doctor he acted like doesn't know and saying just leave open for few days (figure that one).

Grace said:

I hope you're family's okay!
Sometimes when the area around my PD catheter is irritated I swich to gauze+paper tape for 24 hours or however long is needed. I find it less irritating and more breathable. Sometimes I try to cover a larger area with gauze so the skin that's usually covered in adhesive gets a rest.
I don't know if it would be appropriate for Anna; use your own best judgement.

Svetlana Finley said:

Hi, everyone
I hope everyone doing well.
Anna is doing great with her blood levels. She still has problem with her line area. It has what dr. call heat rash. They want us to leave area open for few days, to let that area dry and healed up, but they also concern she might get infection. FFP people saying some patients just put band-aid on and they are ok.
Any suggestions?

[lisa ann peterson]

i was under the impression that you cant leave a line uncovered at least thats what we were told and thats what i was always told in nursing school because of high risk of infection.

Svetlana Finley said:

Yes, we did use that, but now it seems that doesn't help... Our regular dr is not in town and other doctor he acted like doesn't know and saying just leave open for few days (figure that one).

Grace said:

I hope you're family's okay!
Sometimes when the area around my PD catheter is irritated I swich to gauze+paper tape for 24 hours or however long is needed. I find it less irritating and more breathable. Sometimes I try to cover a larger area with gauze so the skin that's usually covered in adhesive gets a rest.
I don't know if it would be appropriate for Anna; use your own best judgement.

Svetlana Finley said:

Hi, everyone
I hope everyone doing well.
Anna is doing great with her blood levels. She still has problem with her line area. It has what dr. call heat rash. They want us to leave area open for few days, to let that area dry and healed up, but they also concern she might get infection. FFP people saying some patients just put band-aid on and they are ok.
Any suggestions?

[Svetlana Finley]

Thanks Cheryl,
Anna doesn't use Chloraprep for a looonng time, when she had first time long term line put in. She did develop very fast yeast infection, so we had to stop using right away. She can't even use alcohol on her skin, so when i change her dressing it is pretty much wipe very fast with cloth, triamcinolone cream over it and cover. She can't even use biopatch for more then 3 days. Her line gets to change pretty much every day.

Cheryl Christine Pallme Biermann said:

Yikes! I'm with Lisa-A central line infection is horrible option to irritation! Nathan had so many line infections before the advent of chloroprep and this led to long stays in the hospital as we battled yet another reoccurance of Ahus! If it wasn't for all the line infections, he'd most likely still have his kidneys, I was just talking to our doctor about this because Nathan's case is being reviewed for some medical papers, and he agreed that ths was indieed the case. Please use extreme caution - Nathan just had what appeared to be a yeast infection on his skin under the tegaderm and we put him on flucosanole last week, but we did not uncover it...we had to take him off the flucosonale today, bcause he had severe stomach aches and we needto take pancreas levels, but it says covered no matter what. I hope we don't scare you, I admit Nathan seems to have been more suseptible to infection than even most Ahus patients. Anna still has working kidneys and th hope of treatment soon, so I am pleased you came here for avice, I hope this will help you in talking with her docs.

[Svetlana Finley]

That is ok Cheryl, we did tried to use betadine, she can't use that one too. I think her skin is very sensitive to everything. Even when they put line in they couldn't use some cleaning stuff that they usually use for sterile. I am not listening to that dr. who told me to leave it open for 2 days. Anna never had line infections and i won't let her have it, just because i left open. We just doing with cream and hopping that will solve eventually our problem.
Thanks for prayers.

Cheryl Christine Pallme Biermann said:

Yeah, I remembered you all couldn't use chloroprep, I was only mentioning it as the sole reason that N doesn't have a problem any more with that. I guess my message was lost in too much blabbering, my real intent was to indicate that leaving the line uncovered is very risky, ESPECIALLY because she can't use alcohol or Chloroprep! I don't know if they've tried the cleanser, Betadine with her, it might be a better option than the other two and better than a fast swipe with a wet sterile guaze...hope I've clarified it for you. Good luck I'll be praying for her.