everything is possible... the impossible just takes a little longer

slow and steady wins the race

Wednesday, October 6, 2010

TOBI is in the house!

Well we are coming up on nearly 2 years without any hospitalizations!!!  Can I get a "WHOOOO HOOOO"!!!!!!   Now I am not so naive to think that we have put all the midnight runs to the ER and mounds of paper work and sleepless nights on those awful hospital recliners are behind us but I do have to say that our little hiatus has been really nice.  Slow and steady wins the race!

Some of you may remember the days when we spent more time at the hospital than we did at home.  When it required a pack mule to haul all Sam's medical equipment from one place to another.  Well we are traveling much lighter these days and Sam's health has never been better.  

In the past Sam was hospitalized with horrendous sinus infections.  Sam would stop breathing and turn gray... it was vary scary and no one could figure out why. After a battery of tests the docs felt it best to do an MRI to look for brain tumors or bleeds on his brain stem because they had ruled out everything else... or so they thought.  After we got the MRI's back you have never seen a happier mom who got the "your child has mastoiditis and a severe sinus infection" diagnosis.  Believe me, as serious as it was, I would gladly take a sinus infection over a brain tumor any day!  With Sam's extensive medical history, whenever we hear hoof beats everyone wants to look for zebras (something rare)... but in this case it was just a horse (something common)!  

Since then Sam has been on antibiotics EVERYDAY... but that didn't solve the problem completely.  About a year and half ago his pulmonologist (I love this man... Dr. Gabriel Aljadeff, Director of Peds. Pulmonology at Lutheran General Hospital) suggested we put Sam on TOBI (inhaled Tobramycin). TOBI is an inhaled antibiotic administered via a nebulizer.  Sam takes a dose of TOBI 2 x a day for 28 days and then he is off it for 28 days before starting another round.  This medication is typically prescribed for people who have Cystic Fibrosis or chronic issues with the pseudomonas bacteria.  TOBI is VERY expensive and because Sam does not have CF we had to jump through some hoops to prove his pseudomonas connection, but his near death experiences with horrible sinus infections was enough for our insurance company to agree to it.  So when I get my "your insurance company saved you $4,355.00" sticker every other month on Sam's TOBI medication I say a little thank you.  

Right now I can hear the fuzzy hum of Sam's nebulizer machine behind me.  

I truly believe that it is the TOBI that has kept all the bad infections at bay,  kept him healthy and out of the hospital and has reduced Sam's need for IV antibiotics.  And not only have his sinus infections, or at least the ones requiring hospitalizations, nearly disappeared but his ears have not had the fluid build up that he has had in the past.  His ENT is thrilled with the way things look "in there".   AND because TOBI is inhaled it gives his sensitive GI track (or what is left of it) a break from having to ingest 2-4 antibiotics at a time. And because Sam had nearly his entire large intestine removed due to  Hirschsprung's Disease  anytime you can cut back anything that messes with what little natural intestinal flora he has is a good thing!  So systematically TOBI has improved Sam's health in a number of areas and we couldn't be happier. 

No comments: