Harness straps and chemo port...

soph's mom · Nov 7, 2014

Are there any techs familiar with the best methods for car seats and chemo ports? Sophie was diagnosed with cancer and has been in the hospital for almost two weeks. It just hit me tonight that her radian straps will hit right where her chemo port is and the pressure on that needle will be very painful. I started booster training her on just a couple short rides so I had an easier emergency seat before her brother came but at 4 years old I don't really want to booster full time. She has done well with it though. I'm not TERRIBLY worried about her in one if I have to for short rides around town but we will be traveling once a week on the interstate for about 45 minutes and traveling several hours about once a month...

She is 40" tall and was right at 40 lbs but had a 2 lb tumor removed and is just starting to eat again after over a week so I'd say she's several pounds down now. I used a turbo for training.

What are my options?

jacqui276 · Nov 7, 2014

Not a tech but was hoping I could help a little bit. What kind of port does she have? Is it an implanted port? If so, is it going to be accessed when she is travelling in the car or will they only access it when needed for chemo? If it is not accessed (assuming it is an implanted port), it hopefully shouldn't be an issue if the strap is up against the port under the skin.

I also wanted to send big hugs your way! I can't even begin to imagine what you and your little one have been through recently.

soph's mom · Nov 7, 2014

Thanks, my baby has turned 2 weeks, 3 weeks, and will probably turn a month old while we are here and I've barely seen him :-( Not to mention how hard it's been with Sophie. She also has about an 8 inch horizontal incision on her belly close to where the crotch buckle will be.

It is an implanted single port and we may go home with it accessed. The needle sticks out a good 1/4 inch when it is accessed and it is painful. I'm not sure how long it will be accessed bt chemo sessions though. If it's accessed the only option I see is the booster with the shoulder belt coming over the right shoulder but she really is at the minimum for booster use and far below the minimum for what we usually do here. I planned several more years harnessed.

safeinthecar · Nov 7, 2014

Is she small enough for a Kiddie World Plus? Will the super cushy Radian pads make a difference?

DaniannieB · Nov 7, 2014

I agree with the PP that knowing what kind of central line she actually has can make a difference, and whether it will be accessed while she's traveling will make a difference.

I do know that padding with a gel pad was mentioned as acceptable (when necessary) in my special needs course; however, if she has an implanted port, it shouldn't need any padding when not accessed. They usually only have the child accessed when at the doctors office, hospital, etc. rather than when traveling in the car.

From a safety standpoint, if you end up needing to pad the area and she's small enough to RF, RF would actually mitigate some of the potential danger of anything added. I wouldn't want to put a 4 year old less than 40# kid in a booster regularly, especially since chemo will be draining, making her more likely to slouch during longer trips.

jess71903 · Nov 7, 2014

soph's mom said:
Thanks, my baby has turned 2 weeks, 3 weeks, and will probably turn a month old while we are here and I've barely seen him :-( Not to mention how hard it's been with Sophie. She also has about an 8 inch horizontal incision on her belly close to where the crotch buckle will be.

It is an implanted single port and we may go home with it accessed. The needle sticks out a good 1/4 inch when it is accessed and it is painful. I'm not sure how long it will be accessed bt chemo sessions though. If it's accessed the only option I see is the booster with the shoulder belt coming over the right shoulder but she really is at the minimum for booster use and far below the minimum for what we usually do here. I planned several more years harnessed.

I'm so sorry she and your family are going through this! How incredibly difficult.

So, yeah. Ideally, you'd harness her longer, but this isn't an ideal situation. I'd booster her, maybe in a PW with a SG clip in use.

Dillipop · Nov 7, 2014

Where exactly is the port? Will the straps bother it or just the chest clip? If just the chest clip, I would consider making a parental decision to not use it for a bit. Of it's the straps themselves, going to a booster may be the most comfortable while the post is accessed.

soph's mom · Nov 7, 2014

She's just under the 40 lbs limit allowing the shield usage and $250 is a bit high for such a temporary solution right now. We have been in the hospital a couple weeks including a major surgery and about a week in the PICU plus all the ongoing chemo and other treatment so I need to watch money with the bills coming. She probably would have to switch to booster mode on it soon. I considered a Britax booster w a secureguard clip to use only when it's accessed but I'm not crazy about the idea...

We have the heavy pads but the way the needle comes out and then hits a 90 degree angle the straps with or without the pads will apply pressure... :-/

soph's mom · Nov 7, 2014

I started typing before you posted about the SG clip. I guess that's the best idea at least just when it's accessed.

The port is directly below her left collar bone. It is right where the harness straps come down... There's no real way I can see to avoid it.

DaniannieB · Nov 7, 2014

I'm an RN and work with kids with ports. It usually hurts to be accessed, but generally they don't continue hurting a lot after that with just normal activity. Have you asked them to put some gauze or foam around the needle under the dressing to see if that helps stabilize it some? You might also ask the hospital about seeing a special needs tech as they may have access to other resources or have some more hands on experience with car seat straps and ports (like a gel cushion to out over top of that area). If you have her in a seat with a continuous harness you could make the port side slightly looser than the other side. If the chest clip is part of the discomfort, you can call your manufacturer about leaving it off.

The PW SG has a minimum of 40#, so if she's lost weight and is below that! it's not really a safe option at this point.

soph's mom · Nov 7, 2014

I forward faced her around 3. I think she can still fit rfing. Her dad will probably have a fit but it's whatever is necessary. She may leave accessed bc she has to stay on an antibiotic for a blood infection.

soph's mom · Nov 7, 2014

She has the little circular foam pad under the needle now but I can ask them about gauze. She freaks when they remove the sticker covering though and they just replaced that and the needle/lines today so it was going to stay on a week but if we have to go in again we have to do it...

I will ask if they have a SN tech but tech in this area are horrid for the most part so I'm a little nervous what they'll suggest. I can always talk to them and see what they say though.

soph's mom · Nov 7, 2014

I will def at least try the extra gauze though. We can possibly experiment tomorrow. I know it's still more tender than it will be bc the incision still isn't healed.

I know it would normally never be recommended but I'm wondering if I could roll up a thin washcloth (maybe a baby one) for that side to space the strap slightly just when she's accessed...

DaniannieB · Nov 7, 2014

The little circle thing is likely just a bio patch, which prevents infection. It's not giving her any padding. I understand not wanting to change dressings right now, but next time maybe ask about some gauze. They can take 2X2s and fold them up to go along either side and pad the needle and site a little bit. When it comes to the dressings, make sure you request adhesive remover for when they are taking them off (makes a big difference), and possibly ask about different kinds of dressings (there are other options that cover and stick well but aren't quite as painful to remove.

soph's mom · Nov 7, 2014

DaniannieB said:
The little circle thing is likely just a bio patch, which prevents infection. It's not giving her any padding. I understand not wanting to change dressings right now, but next time maybe ask about some gauze. They can take 2X2s and fold them up to go along either side and pad the needle and site a little bit. When it comes to the dressings, make sure you request adhesive remover for when they are taking them off (makes a big difference), and possibly ask about different kinds of dressings (there are other options that cover and stick well but aren't quite as painful to remove.

I will definitely ask about the added 2x2s. They did that when they put it in in surgery. They are using the remover but she is still hysterical. It goes decently quickly but she is so done with everything here (her first words to any of the drs and nurses when they come in are "is it going to hurt" or "will you try not to hurt me?") so she is pretty unreasonable. I will also see what other dressings they have have tomorrow. She actually had to be redressed twice today - once during the replacement and another bc the dressing came off. We don't know whether it was due to sweating or what. I wish this had occurred to me earlier and we could've padded it then. We may be here til the beginning of the week and possibly be done with the meds by then and not be accessed. That would be nice. I have no desire to booster her so her not being accessed would be ideal.

bubbaray · Nov 7, 2014

In the circumstances you describe, I would use a booster, on the passenger side so it doesn't hit her left shoulder. The TB has a lower weight limit (still I think) and fits little kids well. ETA, I would not use the PW because I would be concerned that the SG clip would hit the abdomen incision. Plus you have other things to spend money on it sounds like. The TB is a great choice for younger/smaller kids.

GL with her treatment.

jacqui276 · Nov 8, 2014

Not that his helps right now, but if the needle is sticking out and not flush with the skin when accessed, can you request that they use a shorter needle next time that it is accessed? That should help reduce the irritation a bit. If they aren't unacccessing it for another reason, I wouldn't do so just for that sake though since she would probably find it traumatic. Otherwise, if there is any space between the skin and the top part of the needle, get them to pad with gauze (which they should be doing to help stabilize it anyways).

How long is she going to be on antibiotics for? Is it something that will run continuously or is a home care nurse going to come administer them? Hopefully once it is not being used continuously, she won't have to have it accessed when not in use (and to access it you numb the skin first which will hopefully make it less traumatic over time once she gets used to it).

My non-tech opinion is that if she has to leave with it accessed for a shorter ride home, I would put her in a turbobooster. If you are doing long drives regularly, I would look into slightly padding the area around her port so that the strap isn't rubbing. As a pp said too, over time once it heals, kids often aren't bothered by having the port accessed or having it touched.

ahgirls · Nov 8, 2014

I had no idea about your current journey. Sending positive thoughts your way. I messaged a special needs tech.

kathysr98 · Nov 8, 2014

I've been following your dd's progress on Facebook, and am hoping for continued good news.

My mother was rear ended while driving when she had her port. She called her doctors office for instructions since her port was directly under the seatbelt, and she was instructed to come in for an exam & I believe had an X-ray or scan done to be sure it hadn't moved or been damaged. Hers had not, but it was a big scare, especially considering the Coumadin that comes along with the port. In your circumstances, I would likely booster her to prevent the port being touched.

soph's mom · Nov 8, 2014

I have been generously offered the use of a kiddy world plus to use until she reaches the 40 lb limit by a tech on this board. I probably will be boostering her on the ride home from the hospital (hopefully tomorrow) then limiting rides until the seat comes. People everywhere have been so generous and supportive through this hard time.

I welcome any suggestions from the special needs tech for after she reaches the 40 lbs or any suggestions in general.

Harness straps and chemo port...

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