Relapse and Surgery

June 20, 2006

Greetings Everyone!

I haven't posted in ages and I feel obligated to share what's been

going on with Zevi during the past two years. He was born five and

half years ago with severe bilateral CF and we flew to Iowa City for

for casts with Dr. P. He began treatment at 13 days old and we flew

back every six month for check ups. At age 3 years he wore the bar

less frequently and for shorter durations because his feet were

perfect. On his 4th birthday we flew to Iowa City for a 24 hour

quick check up and we ended up staying for ten days as he required

immediate surgery for a slow and insiduous relapse that we had NOT

been aware of.

zevi was in a wheel chair for 3 months post op. This was January of

2005. We celebrated his full recovery with a big trip to San Diego

for July 4 and a family trip to Sea World. Within 20 minutes of our

arrival I noticed one of his feet appeared to be swelling. This was

puzzling. I ended up driving all the way back to LA as his foot

continued to swell rapidly. Within 24 hours Zevi ended up at Cedars

Sinai hospital on 24 hour IV antibiotics for a week as they contacted

infectous diseas unit to figure out what was wrong. Apparently a

very nasty staph infection had entered at the surgical site at the

base of one foot and traveled rapidly to the top of his foot. It was

very frightening to watch the infection spread so quickly and his

foot swelled to three times it's normal size and started to turn

blue. Poor Zevi could not swim for the rest of the summer. I am

PLEASED to report, that today, one year later he is looking pretty

amazing. He still toes in slightly from time to time but he is

physically very active and a happy guy. Our journey to recovery has

finally reached an end. Five and a half years later I am finally

coming to the realization that Zevi's feet will NEVER look absolutely

perfect but they will function fairly normally. Nobody that looks at

his little feet at the pool will ask what happened. Only another mom

of a CF baby would notice the subtle difference in the appearance of

his foot. I am looking forward to a quiet summer of day camp,

swimming, outdoor play etc. I am still wary when he runs around our

yard barefoot as I will never know how that Staph infection entered

his body. I don't want to alarm him or make him crazy by telling him

to wear his flip flops. I want him to be a mentally and physically

healthy kid so I let him do his thing but I can't help holding his

feet from time to time and getting teary eyed as I recall every

second of his five and a half year journey to full and complete

recovery. At the very first casting a 13 days Dr. P. warned us that

there was A 10% CHANCE THAT HE WOULD REQUIRE SURGERY AT SOME POINT

due to the severity of his case. At the same time I can't help

wondering IF the whole thing could have been avoided IF I had been

more diligent with the bar when he was 3 years old. I will never

have the answer to that and I need to stop dwelling on this point and

focus on the fact that Thank God he looks terrific and is running

around like a little hoodlum! Thanks for reading this lengthy update

and good luck to all you CF parents that are still on the road to

recovery. I am here to share that there is an end and it's pretty

terrific! Enjoy the summer everyone!

Seema G.

AKA

Zevi's Mommy

June 20, 2006

Seema - thanks for sharing that story! What a scary thing to go through and I

can totally understand you being worried about future infections! Glad to hear

that he is doing so well now!

Seth Gersten wrote: