Hickman Line - Dry Suit

[mummeeee]

Hi
Not sure if I'm posting in the right place (haven't seen this topic before - I don't get chance to MN v often)

Just wanted to share with others, as we've recently discovered a company who make made-to-measure dry suits and it's made a huge difference.

DD (3.4) has short bowel syndrome and is PN-dependent. I realise no-one's likely to have heard of it - but what I'm getting at is that she has a Hickman Line (actually it's slightly different version, but v similar). People who are having treatment for leukemia often have one. It's a plastic tube which goes into a vein and the tip usually sits in or near the heart. It's basically a permanent (ish) intravenous cannula. Hopefully those who've found this thread will know what they are :)

Anyway, there v prone to infection, so swimming (especially in the sea, or 'unclean' water) is risky. A friend pointed us in the direction of a company who make made-to-measure dry suits and it has made an incredible difference.

dd is now having swimming lessons once a week! (as it's a lifelong thing with our dd we weren't sure this would ever happen - so v good - welling up with tears on a weekly basis!). Also, we've just spent a week on holiday (centreparcs type place) with extended family and of course dd has been able to join in everything...so it has made a huge difference to the whole family (including ds).

So, not only can we now plan completely different holidays (i.e. those based around pools) we can also encourage dd to try any sport/activity for the future. We live near the sea and dh has a small boat but I have been reluctant to say 'maybe you could try that one day' etc because I've alsways known the risks would be too high. now I can encourage dd in anything water based.

So, as it's made such a huge difference to us, I just wanted to share in case the info found it's way to other adults/children with lines or nurses/others in health care...since none of our team seemed to know about them.

The website is here
www.hammond-drysuits.co.uk/hickman-line-shortie-drysuits.html

Just to be clear, I'm not connected to the company in any way. Just has given us such a boost that I wanted to share.

Hi Mummeeee
Just wanted to say that your DD is able to have so much fun now!
Sounds like the suit has really made such a difference to her.

My son used to be on PN but slowly we now have his central line out now, i never once took him swimming because of infection and would have loved to have seen ur advice back then...he has short bowel sndrome also aswel as other illness....i'm so happy for you that u have found something to make life a little better for her. Can i ask who u's see?

Hi my munchkin is on PN as well she is ten now I'm going to go have a look at those suits now !!

Hi littletommy and PUMBA

Just checked back and saw your posts. Good to hear from you and really pleased to hear your ds is off tpn at the mo, little tommy. I hope he is doing well and your dd too PUMBA.

We see Dr Mark Beattie at Southampton general. Our dd is doing well, but the prognosis is lifelong PN as she has v little small intestine.

PUMBA, could I ask you a bit about your dd and coming to terms with her line, pn etc?

Whilst we were on holiday recently our dd (who's still only 3) and us met a girl at the pool. She was 9 and because it was quiet at the campsite pool there were no other children around. Hence, our dd, ds and the 9-year old got playing. She was a lovely girl throwing balls for our children etc. I could see dd starting to worship her a bit

Later that day, dd came to me all excited, like she had just figured something out. I was washing her hair with a shower spray, but holding her wrapped in a towel so her line dressing stayed dry. She said, "guess what mum, it's ok cos when I'm big I won't need a line". Then she started talking about the big girl we had met (she had been wearing a sort of bikini) and my dd had obviously seen that this 'big girl' didn't have a line and therefore when dd was big she wouldn't need one.

I was quite clear and calm (cried later, my heart breaking) and explained that some people need to have a line and some people don't, but that dd would always need one. I explained that the doctor advised us this was what she would need. I then reminded her of 2 other girls we know (through hospital) who have lines (although both these girls are younger than dd and both have a good chance of 'getting off tpn' as they get older.

My immediate thought was that it would be good for dd to meet older girls who have central lines, so she has another model of what 'big girls' are like and in the long run give her a positive role model. We are members of pinnt, but haven't attended any groups yet. Any tips?

Since we've got back from holiday she's mentioned it again and I've discussed it a bit more. She says she's not beautiful with the line. I am trying to stay calm and answer what she asks, but do you have any tips or advice in how best to help her start to come to terms with it? Also, when to approach different subjects/how to best answer questions without scaring her?

As she's only 3, dd says she wants straight hair too at the moment, and thinks her curly hair isn't beautiful. As she's so young, I reassure her that she is beautiful, we love her, a little bit about beauty not being what you look like but all of you etc. So it's not just the line iyswim.

Thanks