and Pam/Re: Ports and PE

[Guest guest]

, I was surprised to read about Ashton not needing to protect her port.

Conner also has a port-a-cath (in his chest) and we were told by the surgeon

that he would need to wear padding over it to prevent it from breaking with a

direct hit. That's the last thing we would need! Maybe the actual port

wouldn't break, but the catheter might? Anyway, I wonder if Ashton has a

different type of port. Do you know what she has? Conner's is an HMP Access

Device with Vortex technology - that's the only thing I know about it, except

that I think the base of it is titanium - that part certainly shouldn't break.

Pam, we chose to get Conner's port in November, he has bad veins and they blow

easily. Even when we got an IV started, we couldn't go very fast without pain

and would often have to start a new line before the IVIG was finished. The

downside is that we haven't had a lot of luck with the port either. It seems to

move around when they hit it with the needle, so he gets stabbed in the muscle

about every other time they try to access it. Actually the first time they used

it they missed and the surgeon thought the nurses had punctured the catheter and

ruined it before it was ever used - that almost sent me over the deep end!

Conner really hates the port and after they missed this last time, he told them

to do an IV in his arm. Unfortunately they couldn't get that to go either, he

was pretty much beside himself when they asked him what to do next. The upside

is that the port worked well when he needed to be on IV antibiotics for three

weeks recently and we don't have to run things slowly, like we do with regular

IV's. I know other people who have never had a single problem with their port!

Take care,

Mom to Conner (12, possible combined immune deficiency, mild CP, partial

seizures, asthma, GERD,

Hashimoto's disease and resolved adrenal insufficiency),

Hayden (12, unknown PID, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (12, unknown PID, asthma and mild hearing loss/unaided),

and Kelsey - (10, unknown PID, asthma)

Please visit us at www.caringbridge.org/in/connersmith