Pseudomonas

[Stefan & Jennifer]

Kate,

My son is currently on IV therapy for pseudonomas--he's getting 500mg of cefepime via Broviac line twice a day. Â*He was on it before for six weeks at the end of last year.

The Broviac line is placed under general anesthesia and can be kept in for a year under perfect conditions. Â*Removal is an outpatient procedure.

My son gets his IV meds delivered via "Eclipse" balls, which are vaccuum sealed liquid filled tennis ball sized items. Â*They are totally easy to use and make the IV therapy no big deal. Â*Basically you clean the IV line port with an alcohol prep wipe, flush with sterile saline, attach the Eclipse ball, unclamp everything...give it about 30 minutes (for Jake's dose), flush with saline, then lock the IV line with Heparin. Â*All flushes and Heparin come in disposable, sealed, throw away sterile syringes. Â*No needles involved.

The home health pharmacy (Coram Healthcare in our case) sends a nurse twice a week to take temps, do dressing changes and make sure we're not running low on anything. Â*

IV's suck and it sucks to be on it, but in comparison to trach care and management, it's actually pretty easy.

Complications we've had: Â*Line getting clogged (once in 6 weeks), required trip to ER and unclogging with a anti-coagulant.

It is possible for the IV line to get ripped out by a determined kid, so we keep Jake's well covered with a dressing and clothes, but he hasn't done it yet (knock on wood).

Added note: Jake improved rapidly on this medicine, but the pseudonomas can develop a resistance to cefapime as well.
The surgery to place the line will probably not keep Sarah in the hospital overnight...it's like a half hour procedure and the put the child under general anesthesia so they don't move while the catheter is being threaded to the superior vena cava (that's what we were told anyway)

Good luck !!!

[Stefan & Jennifer]

Kate,

Just to add--the line causes him no pain...he rolls around on it and is just as active as ever. He only notices it occasionally and then tries to play with the clamp and the port, but we usually have it covered up.

Stefan

[Lily's Mom]

We've used two weeks of inhaled gentamycin with Lily once before. Â*She's probably had pseudomonas most of her 3 years, but we've only had to treat it once so far. Â*It's not really possible to totally eradicate Pseudomonas (or any other organism) as long as a foreign body (e.g. a trach) is present. Â*And unfortunately, the more antibiotics you throw at an organism, the more likely resistance is to develop. Â*Is Sarah still sick? Â*Or are her cultures just still positive? Â*How many times have they repeated the cultures? Perhaps you should consider seeing an infectious disease specialist if this is still an issue?

Good luck
Erica (Lily's Mom)

[bosslady_tx]

Frank uses gentamicin. He uses one vial diluted in 4 mls of saline, twice a day for 14 days. He has been on this about 4 different times since Novemeber. He is currently on Bactrim and Gentamicin, while we are awaiting the results of his culture.

Misty Dowdell

[Jacks Mum]

Hi kate
I know psuedos is a pain in the butt, I am not sure about all the drugs that can be used, but when Jack had his first bout of it there was 4 drugs that the psuedos was sensitive too, the docs picked the lowest form of AB's to treat it.. Use the big guns only when desperate as psuedos will always be around and will branch off at different times.
Jack was on a tablet form orally which did its job pretty quick, 5 days of a course and his secretions & sats were back to normal in 3 days. I can still smell it daily, yukky http://www.tracheostomy.com/iB_html/non-cgi/emoticons/confused.gif