Thursday, November 3, 2011

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?


Rochelle said...

YAHOO for the awesome pharmacist. Thankful that the dr realized she was over her head and praying that you find someone perfect to work with asap.
Of course, you are his best dr!

Becca said...

So happy about the pharmacist!! I hope you discover other such caring people to add into your lives soon. Whew, so many things to think about! I'm so sorry it's been such a bumpy ride all-around.

Chromosomally Enhanced said...

your lovely beans....make me SMILE!! sorry it has been so rough...i like that the ped was honest and accepted that she could not be the one...Jax needs a champion! hope things start going a bit smoother! smiles

Anonymous said...

I'm curious, only because my sister is a compounding pharmacist. Can you get the prefilled syringes at any pharmacy? Could you get them at a compounding pharmacy and then pay the compounding pharmacy to re-package the med? I've done that with my son's stuff, as well as my grandmother's, although I'm positive they are different meds.

Melissa Farr said...

Hi Kristen
I have followed this blog for awhile and I truely admire you. Your children are beautiful.
I wanted to let you know that we had the BEST ped in all of OC. Her name is Dr. Trina Austin. She is with Talbot medical group in Fountain Valley. I know that she traveled to other locations too. She has privelages at CHOC and Long Beach Memorial. Also we had the best surgeon that did David's Fundo at Long Beach Memorial neamed Nam X. Nguyen, MD. He is with Miller Childrens Hospital. We loved him. We moved to AZ now. Please email me if you have any questions. I would love to help.

The VW's said...

Love these pics of your cuties! Sorry it's been so rough lately! Praying all gets sorted out soon and you can begin to truly enjoy your new home in California! Hugs!!

Scrappy quilter said...

Yahoo for the great pharmacist. So sorry you are going through all of this. Praying for you. Hugs

Shelly Turpin said...

I am so sorry that things are crazy! But so grateful for the pharmacist. So wonderful when you find someone, anyone willing to help. Hugs, my friend. I'm so hoping that soon everything will be figured out and settled down for you! You deserve a break - a really long one!

Anonymous said...

I am glad that since the doctor couldn't handle everything Jax needs that she was able to bow out. I really hope you find the right pedi for him! I know the right one is out there somewhere! Love the pictures! Boogies and all :-)

Cammie Heflin said...

So glad someone was actually able to help you!! When do you find out if he gets the waiver? That should help tremendously! We have Addy on our private insurance but she also has Missouri Medicaid because she has DS. No applications necessary, if you have DS you get the waiver. I don't understand why are UNITED states are so different!

Melissa said...

I'm so glad you found an awesome pharmacist and hope the new ped works out too!