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.

[Amy Swarbrick]

(original reply to post)
Comment by Linda Burke on July 3, 2009 at 12:58am Delete Comment
Hi Amy,
What a clever idea! Skyler has sensitive skin when it comes to dressing changes and Tegaderm. We found three products useful when his skin started to degrade - Duoderm, Op Site. and Whisk. Op Site is like a less sticky Tegaderm, I guess I first discovered it already applied on my child after a surgery - I usually request it now for Skyler when they access his Mediport for the Soliris infusion. Since it's only on for an hour, the Op Site is much easier on Skyler's skin - can't wait to ask about the Press n Seal at the hospital. Duoderm is more often used for burn patients, I was told and it's a thick, flesh-colored square about 3 X4 inches. When Hunter's skin was raw at this tessio site, we'd cut a hole in the center and drop his double lumen tubes through it. It provided a little chafe-free rectangle of the skin around his tessio or Mediport that could be cleaned and covered with an Op Site. When the Op Site was removed, it only pulled the Duoderm, not the skin. A nice buffer... Whisk is just adhesive remover to make the Tegaderm come off more easily- easy, yet effective. Funny, but you'd think everyone would use it as a matter of course.
Thanks for adding this topic- it will be a great thread to follow. Hope you have a fun 4th of July!

[Amy Swarbrick]

(original reply to post)
Comment by Svetlana Finley on July 3, 2009 at 1:48am Delete Comment
Hi,
We went to play with water little bit and we did try use Press and Seal, but it came of us soon as Anna got little wet (bummer) we tried, maybe it will work for other use. She can only use Duoderm and nothing else, her skin doesn't like Tegaderm or Whisk, us soon us those touch her skin, it will start getting really bad rash and at that point she can use only paper tape until it heals up.

[Linda Burke]

I'm thinking that the Glad Press n' Seal would be great to cover Emla (lidocaine) cream. I put Emla on Skyler's mediport, then usually cover the cream with a small Tegaderm so that the cream stays in place to numb the skin for the Huber needle access for infusions. Skyler has such sensitive skin that this method may just be a breakthrough for him (and our hospital!).
Skyler goes inro the hospital on Tuesday, July 14th for another scheduled Soliris infusion, so I'll give the Glad Press n' Seal a try and will report back.

[Svetlana Finley]

Other Q, We never had that happen, but i want to know what to do: when child has a fever i know we have to take her to the hospital to check for infection, do u give her Tylenol, or just take her in and let them take care? What do u do about head aches?
Thanks

[Linda Burke]

The Glad Press n' Seal works so well to cover Emla (lidocaine) cream before access!!! We just tried it today on Skyler's sensitive skin and it worked wonders. I brought the entire roll up to the Barbara Bush Children's Hospital wing on the 6th floor of Maine Medical Center and demonstrated to the staff. Thanks, Amy - the nurses and docs were thrilled to have a new "trick" and you can bet other parents and their children will love it, too! I left the roll of Glad Press n' Seal on the floor for others, and intend to buy a new roll for Skyler's personal use. (I wonder if a sterile gauze can be put underneath the Press n' Seal to cover Skyler's mediport for the 35 minute Soliris infusion in lieu of the Op Site we now use?)

[Jessica Olivia Frysz]

WOW.... I've never heard of that being used, although I can see why you are a little bit paranoid. Do you use tape over the press n seal? Or, do you just press it on and let it go? It might help to put some paper tape or something on the edges to make sure that nothing is going to get through, and it's good that it's better than tegaderm, want to know why? No pain when it comes off, tegaderms are a pain when you have to put them on, once you put it on, you have to make sure there are no wrinkles, and then when they come off they HURT, I should know, I have had so many tegaderms placed on me, I'm surprised I still have skin hehe. But, that's interesting that they use that.

[Colette Ann Frysz]

Svetlana Finley said:

Other Q, We never had that happen, but i want to know what to do: when child has a fever i know we have to take her to the hospital to check for infection, do u give her Tylenol, or just take her in and let them take care? What do u do about head aches?
Thanks

[Colette Ann Frysz]

Svetlana,

When your child has a fever it is still okay to give tylenol for it. You can even use ibuprofen but I'd check with the doctor to see what they recommend. With Jessica we did use both. The same for head aches. Now when there is a fever you do need to monitor it. Before going to the doctor, I'd always have taken Jessica's temp and blood pressure and they would do so again to see where we were. A fever usually means an infection is going on but it doesn't always mean it's related to catheters. It could be just kid stuff.

[Svetlana Finley]

I didn't know u can give your child ibuprofen for fever. Our doctor doesn't allow to give Anna ibuprofen at ALL and same with Advil, only the Tylenol for everything. I did talk to our dr. to see what they want us do, and they do want us to take her in for blood cultures.

Colette Ann Frysz said:

Svetlana,

When your child has a fever it is still okay to give tylenol for it. You can even use ibuprofen but I'd check with the doctor to see what they recommend. With Jessica we did use both. The same for head aches. Now when there is a fever you do need to monitor it. Before going to the doctor, I'd always have taken Jessica's temp and blood pressure and they would do so again to see where we were. A fever usually means an infection is going on but it doesn't always mean it's related to catheters. It could be just kid stuff.

[Phyllis Ann Talbot]

Svetlana - check with your dr's - we can give Hyde Ibuprofen but only b/c he's on dialysis and they consider his kidney's done - so they aren't worried about additional damage. This was new news for us - being able to give Ibuprofen - wich came up after his secon febrile seizure - they want us to do whatever to try to keep this down.

Svetlana Finley said:

I didn't know u can give your child ibuprofen for fever. Our doctor doesn't allow to give Anna ibuprofen at ALL and same with Advil, only the Tylenol for everything. I did talk to our dr. to see what they want us do, and they do want us to take her in for blood cultures.

Colette Ann Frysz said:

Svetlana,

When your child has a fever it is still okay to give tylenol for it. You can even use ibuprofen but I'd check with the doctor to see what they recommend. With Jessica we did use both. The same for head aches. Now when there is a fever you do need to monitor it. Before going to the doctor, I'd always have taken Jessica's temp and blood pressure and they would do so again to see where we were. A fever usually means an infection is going on but it doesn't always mean it's related to catheters. It could be just kid stuff.

[Donna Kolp]

Phyllis,

I am kinda surprised about the ibuprofen because like Sveta, we were told also not to give it. And at the time that I had asked Jonathan was already on dialysis. I was told that it is metabolized in the kidneys, and if the kidneys are not working it can build up in their system. Interesting, as now I am going to have to ask since Jonathan is now on Hemo. :)

Phyllis Ann Talbot said:

Svetlana - check with your dr's - we can give Hyde Ibuprofen but only b/c he's on dialysis and they consider his kidney's done - so they aren't worried about additional damage. This was new news for us - being able to give Ibuprofen - wich came up after his secon febrile seizure - they want us to do whatever to try to keep this down.

Svetlana Finley said:

I didn't know u can give your child ibuprofen for fever. Our doctor doesn't allow to give Anna ibuprofen at ALL and same with Advil, only the Tylenol for everything. I did talk to our dr. to see what they want us do, and they do want us to take her in for blood cultures.

Colette Ann Frysz said:

Svetlana,

When your child has a fever it is still okay to give tylenol for it. You can even use ibuprofen but I'd check with the doctor to see what they recommend. With Jessica we did use both. The same for head aches. Now when there is a fever you do need to monitor it. Before going to the doctor, I'd always have taken Jessica's temp and blood pressure and they would do so again to see where we were. A fever usually means an infection is going on but it doesn't always mean it's related to catheters. It could be just kid stuff.

[Phyllis Ann Talbot]

Donna - hmm - yeah - let me know - and I can double check - I was nervous using it - but they said it is dialyzed out the same as other medications that go through the kidneys - I'm curious what your dr's say - but it's probably even more likely to be dialyzed out with hemo than PD.

Donna Kolp said:

Phyllis,

I am kinda surprised about the ibuprofen because like Sveta, we were told also not to give it. And at the time that I had asked Jonathan was already on dialysis. I was told that it is metabolized in the kidneys, and if the kidneys are not working it can build up in their system. Interesting, as now I am going to have to ask since Jonathan is now on Hemo. :)

Phyllis Ann Talbot said:

Svetlana - check with your dr's - we can give Hyde Ibuprofen but only b/c he's on dialysis and they consider his kidney's done - so they aren't worried about additional damage. This was new news for us - being able to give Ibuprofen - wich came up after his secon febrile seizure - they want us to do whatever to try to keep this down.

Svetlana Finley said:

I didn't know u can give your child ibuprofen for fever. Our doctor doesn't allow to give Anna ibuprofen at ALL and same with Advil, only the Tylenol for everything. I did talk to our dr. to see what they want us do, and they do want us to take her in for blood cultures.

Colette Ann Frysz said:

Svetlana,

When your child has a fever it is still okay to give tylenol for it. You can even use ibuprofen but I'd check with the doctor to see what they recommend. With Jessica we did use both. The same for head aches. Now when there is a fever you do need to monitor it. Before going to the doctor, I'd always have taken Jessica's temp and blood pressure and they would do so again to see where we were. A fever usually means an infection is going on but it doesn't always mean it's related to catheters. It could be just kid stuff.