- ports

November 1, 2000

- check the access device page on the PedPID web site. there is

information there. My opinion is to consider a port if several different

nurses have problems getting an iv. With Macey it was put in because even

doctors could not get iv's on her, even when she was sedated and not

thrashing about. The port was the doctors idea not ours. Macey has had

iv's that blow (big bubble comes up under the skin at the needle stick

site). But " rolling " veins don't happen. A nurse will say a vein rolls

when she just can't get it. gymnastics is really a question of where the

port is placed and what the surgeon advises. Gym class isn't a problem.

We've used veins in Macey's arms and hands and feet but haven't ever heard

of the leg. I've heard of lines being placed in the leg (groin area mostly)

but not regular iv's. With a port there are many things that change in how

you look at simple things.. With us, any fever over 100.5 and we had to

draw a port culture and stick for a peripheral culture to check for

infection. There was a knobby bump over her left breast and she refers to

it as her " booboo " . even now after it being out for almost 2 yrs and she

still has a raised keloid scar. Plus they had to put hers in through her

neck so there is a small scar there. But during the year of having it we

didn't experience the dreaded 5 and 6 stick screaming sessions. She was

treated (I believe) alittle more aggressively for her sinuses because we

could start IV antibiotics sooner due to the port and not having to wait for

an appointment for a line placement. Also the sedations she had during her

port time were easier because there was instant access. So there are good

and bad thoughts on ports. If Macey goes back on IVIG I'd like to get

another port. Mostly because I like the access for antibiotics since her

chest seems to be giving her fits and also because our local intensivist has

told us that her access even for lines is crappy. He suggested last year

that she needed a Broviac catheter or port even if she didn't go back on

IVIG because if she became septic again he couldn't promise he could get

another line in her too quickly.

Hope my chatter didn't confuse you even more.

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

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