"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Saturday, July 26, 2008

Update on sickies

I know we haven't updated (sorry Misti!!) Marissa is a lot better. No fever and more energy. She did need a little O2 for a couple of nights to keep her sats normal, but she hasn't needed it for the last couple of nights. She developed a little wheeze at the end of her cough, so we are treating her with a nebulizer and she is sounding much better. That's the good news.

The bad: The trach culture came back positive for a bacteria called pseudomonas. This bacteria is very common in trach kids and is very hard to treat. We think she is colonized with it because it is not what she is sick with right now. It can very easily turn into pneumonia, so it needs to be treated quickly if it is in its active state. Unfortunately Marissa's pseudomonas is sensitive to only two kinds of antibiotics. The first is IV administered over a period of 7 days. Obviously this would require hospitalization. It would be a shame for her to be hospitalized for the sole reason of giving her meds! The other kind is inhaled through a nebulizer. Problem with this one is it comes at a price of ... $4,000!!! Our insurance company said that it is above our price limit on our plan and for them to pay for it, they have to go through an override process which could take up to 48 hours!! Can everyone say catch 22?!?
Because this is something that is likely going to make her sick in the future, her doc is trying to get a pre-auth for this med so in the future we don't have to either hospitalize her or wait two days for the med. Aaaaggghhh!! Hopefully the insurance company will be reasonable (Oxymoron!?!) and realize that hospitalization for a week would be much more expensive than $4000 for 2 weeks of meds. We'll see!!!

On a different note Marissa likes to play the Yawnie game. I dare you to watch and not get sleepy!!


Anonymous said...

Oh man...dilema dilema dilemas!!! Well as long as treatments happen that's all that matters!
I love the yawnie game!!!!!!!! Its so cute...and the little shake of her head?! Amazingly adorable lol kisses to all
Love you,
Auntie Katelynn

Faith said...

They can't treat it with g-tube antibotics? They gave Faith a 10 day run of cipro which seemed to do the trick. Maybe your docs are trying to rid it for good..I dunno..nevertheless you need to get on the waiver! At least it's an election year so hopefully things will move!!! Glad to hear she's feeling better!

Nana and PaPa said...

Oh my...the day to day, week to week challenges of Marissa! Do you ever think of writing a book on your experiences with Marissa, the medical field and INSURANCE??!! You could make a million and use that money to pay for the medicines and procedures and blood tests that the insurance WON'T pay for...hhhhmmmm. Glad she's so much better. Couldn't see the yawning, but as I write this..of course..I YAWNED!! lol

Anonymous said...

We pray that you get the meds. I am so sorry that there is yet another hurdle. Marissa looks great though!! I hope this gets resolved soon. Love Uncle Norm and Aunt Teri