Saturday, February 2, 2013

Everyday experiences!

Jaxson has been super super junky! I could tell it wasn't a respiratory virus like RSV or HMV. He wasn't sick, just junky. We have yet another new ped, who we've only seen twice, but she has been fantastic! She hasn't had a lot of complicated kids, and that's actually ok. She listens to me, and she loves having to push her skills as a doctor to take care of Jax. I told her that when he gets junky like this with no respiratory symptoms, it's always pseudomonas. We got a trach aspirate, and waited. It indeed grew out oodles of pseudomonas and also group A strep. The ped wanted to call our old doc, instead of just guessing the best antibiotic to give. (Another big point for her!) they decided Toby nebs and keflex for the group A strep. When I heard the name Toby I just cringed! This is a 6,000 dollar medication. It's one of the most ridiculously overpriced medications that I've ever had to deal with. Of course our insurance won't just cover it, we have to call a 1-800 number and do the whole pre approval crap. This whole time he's not getting the antibiotic. It's unbelievably frustrating to not get a medication your son needs! Even when it's approved it's a 200 dollar copay! Now Jax finally has a secondary insurance. But this insurance said they wouldn't cover it either! I can't even call to find out why because they are closed until Monday! I can't even stress to people who don't go through it just how frustrating it is that I have to fight for things my child needs to survive! Two insurances and no medications until some time next week, and even then I don't know how much will be covered!
By the grace of God I have some Toby left over and it doesn't expire until 2014. Having this little bit is what's keeping me from a complete breakdown! Keeping me remembering why I fight with everyone. Because a gorgeous little boy is depending on me! And I can't let him down!
I needed to relieve some stress and so we headed to the happiest place on earth. Because I always forget everyday problems being there with my babies!

And then that night the boys wanted to have a sleepover with Jax. After moving equipment around we got Jax on the floor with his brothers. It's these things in life that make me love being a mom, and build up my energy for the next battle to come!


The VW's said...

That would be tiring and frustrating! Hang in there Momma! I wish I lived by Disney....that would definitely help raise my spirits!

Anonymous said...

So sorry to hear you're struggling Lacey. Thoughts and prayers are with you xxx
(Don, Sam, Mia and Liam UK)

Tia said...

Sorry to hear your frustrations, but I love how close your boys are - even to sleeping in the same positions!