Anyone have a child with a Portacath?

[Bubble2bubble]

Dd2 has been admitted for IVs three times over the last year and may be well back again in the next few weeks, so they have brought up the subject of a Portacath (she has CF)
While I find it really upsetting I know she can't go on getting long lines so frequently and a port will eventually mean less trauma. Her consultant suggested getting a teddy with a port fitted - she is eight so will probably like this - but I think I need to find a better way to explain it to her in words as well. Has anyone seen a good child friendly explanation of how a port works?

If you're on Facebook the cf parents page may be able to help alternatively the forums on the CF trust. The cf parents page is private do you would need to be added. Have you thought of talking to the play specialist at the hospital, they may gave some age appropriate ideas.

My dd is also 8 with CF, we talked about a port done years ago ( again complete nightmare to get long lines into ), but she started DNase and since then has ( touch everything wooden) kept relatively well, so it's been placed on the back burner. Good luck to your dd speaking to other parents they can be a huge help.

My daughter had a portacath fitted at the age of 4 when she was diagnosed with leukaemia. She was shown how it would work by one of the nurses who used a large torso mannequin with a port inserted. She had the port til 5 months after treatment ended which was 32 months in total and we never had a single issue with it. Hope this helps

I don't think I am on the Cf parents FB - will have a look thanks! Used to be On the CF Trust forum all the time but everyone has disappeared since they revamped it .
Good point about the play therapist though - DD did have some sessions with an amazing one after a traumatic admission a few years back, but I had forgotten about it. Will definitely ask if we could be referred again. They did say they could arrange for us to talk to other parents and even see an adult who had a port if we wanted to, but I think I am just trying to get my own head around it before I start talking to DD about it.
That's amazing the the DNASE worked so well for your DD, hope it continues :)

That sounds good labtest. I keep tell myself they do this all the time so they will find the least traumatic way to introduce it.

This is a pretty good explanatory video. It is American though so some practices will differ. You may want to view it for yourself then decide if it's appropriate for your DD. The video talks about cancer patients so if you show it to her you will need to explain beforehand.