Portacath surgery

[alibobins]

Dd 11 is having a port fitted on Tuesday :( I haven't really spoke to the surgeon so don't know much on terms of recovery and pain. Has any one had any experience of a port? If so where was it placed and did it work?
Thanks x

Ali so sorry to hear that your DD needs to have a portacath fitted :(

My DS had one fitted when 10yo back in 2000 (well he had the central line that left the dual lines exposed - I know some are fully internal and accessed by a small needle for med's in/bloods out etc).

There was a little discomfort (not helped by a nurse pulling it on a drip stand when putting IV's through) but it lasted only a few days and was helped with pain relief.

TBH once it was in after a few weeks he managed to do most things with it and you would never know unless you saw it that it was there. He was however very concerned about it accidentally being pulled etc.

Do you have other DC's? I was only thinking the other day that we were fortunate that we didn't have to worry about very lo's accidentally pulling on it etc.

All the best :)

Thanks for the reply x x I do have 2 younger children but the port is totally under the skin when it's fitted so we don't have to worry about others pulling out. Dd is just rubbish with pain and is really worried about the appearance as an 11 year old girl would x

My daughter has had one since June. Surgery took about three hours but she was fine afterwards and so far has had no trouble with it. She is 5 and has acute lymphoblastic leukaemia.

Labtest- was your dd in much pain after? How long did she stay in hospital? Sorry for all the question x x dd is having weekly infusions of chemo and infliximab for an autoimmune disease
How is your dd doing? X x

My DS was rubbish with pain too. He also hated needles, hence the external loops. I don't think the appearance will be problematic for her, but it is understandable she is concerned. However I really don't think anyone else will notice.

Has she had a chance to have a chat with anyone else who has one already fitted? I know they did this for my DS as he was so concerned (and practically refusing to have it done - in fact he very nearly didn't - it was only when a surprise gift turned up that made him overjoyed that they realised that his appearing hugely resistant was just how he responded to anything that he didn't particularly want to do rather than his decision not to have the treatment).

It is so rubbish that these children have to cope with such awful issues.

Sorry to hear your DD has ALL labtest.

Do you mind me asking what your DD's diagnosis is ali ?

Wishing both of of your DD's all the best with their current health problems.

xx

She wants it done as she is very hard to cannulate and her veins can't cope with the infusions she has been given the option of her breast area or near her ribs x
Dd's got uveitis which is an eye condition but all the usual treatments have failed hence the very aggressive treatment

I think if she wants it done it will be half the battle.

Sorry to hear that first line treatments haven't worked, lets hope that the aggressive treatment will be well tolerated and that she is soon well :)

My son is 3 and he had one fitted in January. He was diagnosed with ALL on the Monday and we had to decide between a Hickman line or a port to be fitted on the Thursday. His surgery took about 1 1/2 - 2hrs and he wasn't in any pain after.

He has coped really well with it and when it is accessed he calls it his wiggle and his batteries! You wouldn't know it is there when he isn't accessed which is the primary reason we chose it.

I hope it all goes well x

She is doing well so far thanks. No side effects to treatment other than hairloss. We were in hospital 10 days in total but that was more so they could begin the chemo than from issues arising from the operation. She has a tiny scar on her neck which is barely noticeable and another on her chest though some have that scar under their arm. I think it depends on the surgeon. The port can be felt through the skin which I initially found disconcerting but am used to ot now and my daughter rarely seems aware of it.

Hope all goes well with your daughter's op.

Hi

My dd (3.9) has a Broviac line, and although it's not a portacath I thought it might help to post about it anyway, since they are similar.

Because my dd's need for the line is lifelong (it's for TPN (nutrition)), we've been through a few. She's had line surgery now about 8 times.

First some reassurance, I hope. Our experience is that scheduled line surgery (as opposed to emergency surgery) is usually quicker and more painless, because she will have an experienced surgeon. The tunnelling (to put it under the skin) does result in some pain but my dd has always coped with Paracetamol and ibuprofen. They inject some local anaesthetic into the area during the op, although always good to discuss this with the anaesthetist before to check they will.

There maybe a surgical nurse specialist for the ward, who you could phone and speak to. This person will be trained to describe the procedure and the portacath device. He/she might be able to show your dd a device so she can see it and handle it.

I would def suggest you discuss the location with the surgeon, they may not be able to locate it where you would ideally want, but having the conversation would def be good.

I hope things go well with the op. If there's any opportunity for your dd to get to know someone else with a portacath this might help her to adjust.

One final thing I would mention is that if, afterwards, you have any concerns about infection of wounds etc to go back in and keep asking until you are happy. I have found this aftercare lacking and we've had complications previously so do trust your instincts.

Thanks for replying x x the closer it gets the more nervous I feel

Hi ali, my ds1 (8) had his port put in last October, it's located at the top of his ribs. He's quite skinny so it's a very noticeable lump on him when he's topless. I think the surgery took an hour or so - he had a lumbar puncture at the same time. He was sore afterwards, but came home a few hours later. I think he took codeine for the pain for a day or 2.

He was very reluctant to stretch, or do anything that required him to lift his arms above his head - so clothing/pj's which button or zip up the front were a must!

It took a number of times until he got used to his port being accessed, but now he doesn't flinch. Make sure you put some Emla cream on it at least an hour before it needs to be accessed.

Good luck on Tuesday.

Managed to speak to the ward so feeling a bit better x x dd is booked to stay in 2 nights depending on pain management and treatment plan x the nurse said I will be taught everything I need to know tomorrow x x dd on the other hand is feeling very nervous and tearful x x

It all went well :) the surgery took around 1.5 hours and Dd was away from the ward for around 3 hours in total, she has had the port placed just under her right breast.
She was very sick all day Tuesday and wouldn't eat or drink so ended up on a drip and stronger pain meds.
Wednesday she managed really well and started to eat. She is very bruised from the neck down and you can see where the tube is, Dd had the mos pain from the neck area.
Thursday was coping really well so we were discharged :)

We are back at the nurse today for a dressing check x x

Glad to hear it went well. I was quite freaked out by being able to see the tube under the skin, and the lump of the port. Tbh, I couldn't look at it for a few days [squeamish]. Very used to it now though!

I don't know if you've seen it at all, but do feel free to join us on the 'Children with Cancer' thread in Children's Health if you want to vent about the chemo and its side effects .