Jaxsons Fight

Thank you my friends for your encouragement! I always know that when I need it, you are there!

Yesterday was rough. Really rough!
The biggest issue was getting Jax lovenox, his bloodthinner filled. Sometimes meds for kids are only available through childrens hospital pharmacies because kids have such different doses. I did find out that I was able to get it through the childrens hospital in the vial that I draw up. Then I find out that the vial is not generic, so it would cost me 125 dollars a month for this med! Generic only comes in pre filled syringes, all way over his dose. As of right now my insurance will pay for the pre filled syringes, us dumping 90% of the med out. What a waste, right? I'm still hoping for a better way, because these syringes are bigger needles.But right now I just need the med filled! Its hard enough to poke my child every day, but to use a bigger needle and make him hurt more just kills me!
Then when I tried to fill his Tobi, to kill these bugs in his trach, I'm told it has to be pre authorized. So I have to wait at least 3 days to give my kid an antibiotic! Again, how smart are these people?
I also finally got my insurance info yesterday, which was good news, because I'm in desperate need of supplies. I knew this insurance had bigger deductibles and out of pockets, and I was prepared for that. But the home care company wants my credit card, and they are going to deduct the 20% every month, which will be about 400 dollars! I don't feel comfortable having them do that as if it was my phone bill or something. Doctors appointments, and countless other things will contribute to his out of pocket, so I'm not going to keep paying the home care company and end up overpaying. If they don't agree, I may be switching home care companies already!
It was just a lot to get in one day. I was on the phone so much that my phone died by 3:00. I was feeling like I was going to be paying hundreds of dollars a month for Jax, and I was ready to crawl back to Utah with my tail between my legs!
Thank you to the fantastic pharmacist at Walgreens. That women got to walk a day in my shoes, and we have both been crazy the last two days trying to figure these meds out. She is picking up his robinol for me this morning from another walgreens that compounds. So I don't have to drive out there and get it.
The pediatrician that we've had the last two weeks has also had a crash course in Jax. She's talked to me more in the last two weeks than probably any of her other kids combined! She has basically told me that she can't handle Jax needs, which is ok because I was already looking for another ped. I meet with one tomorrow and I'm really praying she will work, because right now I feel like I'm his only doctor, and that freaks me out a bit. When I sit down with her I'm going to tell her straight out that I need someone who is ready to dive in head first. That we'll be talking a lot, and just to be prepared for the care Jax requires.

I was sitting with Jax in my lap last night. My 25 lb nearly 6 year old still fits snug right in my lap because he is so tiny.
I was amazed that such a little person can be so complicated, and so expensive. How can someone so tiny require so much technology and equipment. Its amazing, isn't it?
But this same little person is so amazing, and so life changing!
And so is his little sister, actually!


I think the boogy in this picture just adds that extra something, don't ya think?