Port pictures?

[Jane]

Hi everyone,

Josh's doctor wants him to get a port now. His most recent line (mid-line) is in an unstable location and the antibiotics are burning. Josh is coming around to the idea, but it would help to see pictures of it.

Also, how long is the recovery time? We have a vacation planned the week after the surgery- nothing crazy- just a beach house. His surgery is already scheduled for July 7th. There was a cancellation so we didn't get a consult appointment- everything will be done at once.

Do any of you parents have any advice for preparing your child for this proceedure or what we can expect? Thanks!

 

[anonymous]

I knew they were in someone's Blog it just took me a while to go through them and find out who...
<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=7057&catid=251">Cutiepatootie's blog link</a>

I hope you don't mind me posting the link Cuite.... <img src="i/expressions/face-icon-small-wink.gif" border="0">

Jane you might have more luck getting pics asking in the Adult section. And since Josh is 15 they would probably give him an adult size port etc anyway.

I got one when I was 15/16ish and the recovery was not bad it hurt (as in need tylenol) for about 2 days. Then it was a bit of a nuisance for a few days and then I was like what port? I have mostly heard good stories on here...well except poor Kylie...she's having a rough time getting one situated (boobs you know, I don't think Josh will have that issue) <img src="i/expressions/face-icon-small-happy.gif" border="0">

littledebbie
not logged in @ wk - can't run Java right now...computer having a breakdown.

 

[kybert]

hahaha yes yes im having issues. i had mine moved on monday. its just above where cutiepatooties is but its still invisible. dont let my horror stories discourage you. i have bad luck. it runs in the family! and yeah, your son wont have boob issues lol. make sure they dont use the big ports for obese patients. they really are unneccesary in cf patients. a size in between the low profile and normal ones [which are the big ones] is ideal. make sure they will bury the catheter deep enough. ask for the gentlest surgeon around. ports and rough 'jam it in and sew it up' surgeons dont go down too well. my first surgeon was VERY rough and i couldnt move for a month. my current surgeon is very gentle and i can move immediately after i wake up. make sure you and your son know EXACTLY where its going and that hes happy with it. dont let them say "ohhh it will go somewhere around here, you dont get to decide anyway" and have them point to half his body. once again, first surgeon did that and first port was a nightmare. if they put it in the subclavian vein, make sure they place the catheter so its not in the area where 'pinch off syndrome' can happen.

and remember, if all goes really bad once done, these can easily be moved/removed.

 

[anonymous]

please forgive ignorance<img src="i/expressions/face-icon-small-blush.gif" border="0"> i assume my 8yr old will have one of these at some point . are they for administring drugs etc; without the need to go directly into the veins everytime you need anti-biotics. i couldn't see an entry point in the pics , is it very very small?<img src="i/expressions/face-icon-small-confused.gif" border="0"> does it feel irritating or do you just get used to it? thanks in advance .janet uk<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

please forgive ignorance<img src="i/expressions/face-icon-small-blush.gif" border="0"> i assume my 8yr old will have one of these at some point . are they for administring drugs etc; without the need to go directly into the veins everytime you need anti-biotics. i couldn't see an entry point in the pics , is it very very small?<img src="i/expressions/face-icon-small-confused.gif" border="0"> does it feel irritating or do you just get used to it? thanks in advance .janet uk<img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote></div>

Hi Janet,

Its exactly what you said. Do a search here for ports. There is lots of good info! Some people don't need these for a long time, hope your little guys doesn't.

Thanks everyone for your help!!! Kylie, We have an appointment with our favorite surgeon. He placed both of Josh's g-tubes and he's awesome! (Imagine having a <b><i>favorite</i></b> surgeon?<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[anonymous]

Jane:

My now 5 yr old with cf got his first port at 2 months of age-- just a little guy. It lasted for 4 yrs and he had a new one put in April of last year. We flush it our selves every month and it is great for antibiotics, bloodwork, etc., He had 2 central lines and picc lines when first born, until his port which we are so glad he now has. It has come in very handy. I would post a photo, but this computer is a temporary one, the other had a virus......... So I don't have our photo software on here. His is placed under his left collarbone, he is very thin right now so it pokes out alot, but before he got so thin you could hardly see it. It doesn't bother him at all, he runs around with his shirt off and runs into things, jumps, etc., Its kind of funny to see people look at it at the beach with his bowel surgery scars, he doesn't care and we just don't let the stares get to us. He is so funny, one day a little kid asked what it was and he is like"that is my port!" like what is it to ya. He is so funny I hope he stays the same.

Good luck with everything.


Fourkidsmom

 

[anonymous]

ah ! bless him , i hope he stays the same too. janet uk<img src="i/expressions/face-icon-small-happy.gif" border="0">