Friday, August 28, 2009

A ton of updates.......

I am currently sitting here on hold with my health insurance company to find out what will, and what won't be covered regarding adaptive equipment with Jude. Luckily, we have the medicaid to back us up, but the wait is longer through medicaid on certain items, mainly the tomato seat. I have been told they like to initially deny the claim for several pieces of the equipment. Anyway, I am convinced that there is a handbook they pass out when you start working at a health insurance company regarding the treatment of customers who have special needs, or chronically ill children. I am pretty sure they tell you to hang up on the customer at least three times if they are calling regarding anything serious. There is also a protocol to leave you on hold for so long you consider hanging up anyway. If you do happen get an answer it's generally so muddled and full of lingo like, "bulletin point 0271 authorized by a doctor", that you are lost. When you ask what something means they simply reply, "I cannot answer that I am not a doctor". Well you are the one covering it, or not covering it, so why wouldn't you have the explanation of what the bulletin point is that you are requesting. A simple explanation that it's critera a special child has to meet before the coverage is allowed would have sufficed, but I figured that out with my own research. By the time you get off the phone you generally want to throw your hands up, or fly somewhere and ring someone's neck. The good news is after many attempts I finally found out Jude's tomato seat should be covered, but with out of pocket expenses. My understanding is the medicaid will pick this portion up if they deem the chair medically necessary. Let's hope they do, because the amount of medical bills stacked in my bill pay slot is ridiculous! Anyway, there is my vent on health insurance companies. I cannot imagine having a child that has cancer, or another issue that you have to fight every other day with the insurance company. It truly makes you wonder what the possible benefits, and non benefits would be regarding the health care reform.

Months ago when Emily, and I were sitting on the couch, and the idea for Smile boxes were born, many thoughts ran through my head. Emily, and I were looking at the Kids are Heroes website, and she expressed interest in helping other children. We put our heads together regarding ideas, designs, and other miscellaneous things that go into a business. She was so excited as was I, and I watched her idea take off. I told her that I have always wanted to work in charity, and provide services for others. She told me that she would like to do that too, but little did we know that her little charity would take off so quickly. I have told you that we were contacted by a radio station regarding spreading her boxes. We received word from them yesterday that they are wanting to partner with us, and reach up to 84 market areas. I clearly noted that Emily would like to still deliver boxes, and that we would like the siblings to be included as well as the patients. We don't know all the details yet, but just the mere thought of being able to reach that many kids makes Em and I happy. Maybe in the future I can work with these kids in some capacity full time, and make their lives a little brighter. Crossing my fingers! We meet with the station for more details next week, and at that time I will reveal who we have talked to, and the plan. You might say a little prayer this all works out, I believe it could really touch many lives.

So a few days ago my pregnant friend Sarah at work came in from a sonogram. She looked at me and told me she realized she was the exact time in her gestation as I was told something might be wrong with Jude. I was then told I had to decide within three weeks whether I was going to keep him. Just uttering the words, "keep Jude" sends shivers down my spine. It's like for a second Sarah knew exactly how I had felt, and she looked a little scared. She said she is so attached to her baby now, and couldn't imagine any bad news. I nodded my head, and just said "I know" because I really did understand what she meant. Then yesterday one of the women on her pregnancy board lost her baby. I could tell the thoughts creeping into my friends head, and I assured her not to worry. I joked with her that statistically I have her covered, but assured her that she cannot go through this pregnancy worried, and I am sure everything will be fine. I told her I understood how she feels but from the other perspective because I AM that person everyone looks at and thinks, "Man I am sorry for her, but I am sure glad it didn't happen to me, or my baby". I know, I understand, and it sucks, but I get it. I told her it's the reality that this can happen that is causing her worry. I think because I am so close to her and had issues, and then the women on her board it make things tangible, and scary. I assured her again that I have every feeling that her baby will be a bouncing healthy baby girl!

Jude had a decent night, and is going to his grandmothers today. We have noticed an increase in saliva with him that is causing him to choke. I am hoping that when we get more seating for him this will become less of an issue. I just wish the insurance would hurry so we could get the chairs, but I know it's a long wait. I am also really wanting to get Jude a Wingbo which is a swing where special needs kids and be on their tummy more. I am going to pass that information on to a few people because his bday is coming up, but I have also heard insurance is starting to cover it. Although, since it's a new product I am sure I would have one strand of hair left on my head before my insurance, or medicaid covered it.

Also, I would like to let everyone know that I heard from the doctor that treated Jude in the ER. Yes, the one that did not administer an IV, or want to take the X ray. I do have to commend him on calling because I am sure it wasn't an easy task to complete. He didn't directly say he was sorry, but he did acknowledge the situation should have been handled differently. He explained that he had know way of knowing the situation would deteriorate so rapidly in 24 hours, and assured me in the future he would keep that in mind. I hope so, and thanks again to the fabulous nurses, and staff that helped us through that situation.


Midwest Mommy said...

That is awesome that you are partnering with a radio station. You guys are doing a wonderful thing.

jocalyn said...

Kamden received his smile box today! He was absolutely thrilled. I know first hand now how that can make a sibling feel. Thanks for thinking of him.

Anonymous said...

Hi Jenn,
I know all about the Insurance run-around. When we brought Parker home from the hospital, her head was still really large (43cm on a 5 lb baby) and we needed a special pillow for her to be comfortable. It took months of denials and finally after it was approved she didn't need it anymore. I wonder if that is their trick? Say, "no" until we just get tired of asking???
Lots of love to you and your family. So sorry you have had such a tough week. I can't get little Hope out of my mind.
Amy Hendrix

mom2nji said...

Once again, I am so inspired by you.

Cjengo said...

So glad he loved it Jocalyn!!! Thank you everyone for your comments.

Candace said...

That's so cool for Emily! I can feel your pain w/ the insurance. We have been trying to get Faith's stroller, well we started the process in Nov, LAST YEAR! I heard rumors that the chair is in transit, though! They denied us once b/c they said they already bought one for her! When they rented one for 30 days when she was in casts. The rental was for $155, NOW my question is who can buy a wheelchair for $155? Faith's is currently going to cost about 3k! That is one of my biggest pet peeves! I hope you have some success and it comes quickly for you guys!

Katy said...

Your daughter is a rock star!

That first paragraph up there? With the whole insurance company thing? I couldnt' agree more. It just seems like it could be done better. Ellen over at put up a bunch of tips on working with insurance companies--you might want to read them and see it there's anything there that could help you.

That joke you make about statistics? I tell people that all the time too!