Finding our way

We are finding our way through the rough patches of life with a fragile child. I'm still here, and I'm checking on our friends, although comments have been scarce. I'm trying!
This time of year is always rough, its when our insurance has started over for the year, and March is usually the time the bills start coming in, and I find myself digging through whats what.
Today I paid an 800.00 doctors appointment bill that I've been fighting for a year. I finally had to just pay it as it had gone to collections. I'm trying to find the energy to keep fighting to have it reimbursed, because I know it should be covered!
You may know that every medical bill has a code. We found when Jax was just a few days old that a diagnosis code of Down syndrome is never, EVER covered. On our EOB it says "this mental health diagnosis is not covered." Mental health???? So I'm constantly calling about bills that need to have the code changed. After all, I don't take Jax to the cardiologist because he has down syndrome. I take him because he has cardiac disease and pulmonary hypertension. Most people don't really understand where I'm coming from. I really don't mean to sound bitchy, but if I just had Arina I would have no idea either. So all of the nasty comments I receive when I do a post like this are from people that just plain don't understand. You have no idea how much Jaxson costs a month. His food is 1200.00. His vent is 1000,00. And thats just the beginning!
Right now we are appealing his medical bed, it was denied because its not medically necessary for him. I have to laugh out loud to that. The kid has every medical diagnosis you can have, and has every piece of medical equipment possible in his room. But the bed is not medically necessary. I don't really complain about what I have to pay for. Its that I have to make phone calls constantly, and look through paperwork daily, to fix mistakes. I feel like the insurance should pay me a salary for doing their job. It is a LOT of time wasted!

So let me say this...I'm very, very grateful for the insurance that I have. Its one of the best, and they really do cover most things. I am hoping that when we move Jax will get on the waiver. Normal insurance just doesn't cover a multi-million dollar child. Now I know what some people are thinking, I've seen it a lot from our RR adoptive families. People scream that they adopt a child and want state money. So let me say right now that Arina gets nothing, nor will she ever get anything. She does not get medicaid, and she does not get social security, (neither does Jax), and I don't ever plan on asking for it. We brought her home, and we will take care of her. But children like Jax just slip through the system. We can just hope that someday these poor kids will be seen, and not overlooked.
I took him in on Wednesday because he was puffy, and I could tell he was retaining fluid again. He was up a pound from last month. We did a bunch of labs, and thought that his chronically low albumin was the problem again. When I looked up his labs that night, his albumin was normal! I wish for once this kid would just be straight forward! The only other thing I can think of is blood flow is getting tight again returning to his heart, causing him to be puffy. So for now we watch for fluid to start backing into his lungs, causing respiratory distress, and then increase his diuretics. He had an EEG Thursday, but I won't know the results until his neuro appointment on Monday.

He needs to behave because next weekend we are driving daddy down to California. We are super excited to go to the big birthday bash, and meet Addy for the first time!!

Last night some special visitors came to bring something to Jax!
It was Buzz and Woody, with Make a Wish, to bring Jax his official notice that his wish is being granted (although we already have our flight info :) Make a wish is such a great organization. If you have the funds, a small donation does great things. We can take Jax somewhere we would never be able to take him without their help. I still worry about getting him there and not missing any equipment we may need. My home care company has been great, and they are going to ship a bunch of stuff, including formula and supplies, to Give Kids the World, so its waiting for us and we don't have to pack it.
He was so excited to see his favorite characters!




A great ending to a stressful few weeks. And a reminder that life is really great. I'll I have to do is look in my sweet baby boys face. He only has smiles, for all he's been through, he smiles. He does not judge, he only loves!