A Love Song for Insurance

Dear Insurance,

Gosh, we’ve had a really complex relationship over the past few years. It’s hard for me to remember each morning if I love you or hate you. After all, you’ve been very patient with me being so finicky and wanting second opinions. Sometimes a girl just can’t make up her mind, right? But you’ve have moments of stunning stupidity as well. Remember when you said not everyone needs to sleep in a modified bed, and I was all, “Yeah, no duh.”  I got all huffy and tattled on you to Big Brother. Perhaps we should start working on our trust issues.

Then recently you told me that hygiene isn’t medically necessary and I can take my shower chair and shove it. Hygiene not medically necessary? Really? So I just told all of your friends that you don’t wash your hands after you go to the bathroom. And since you’ll clearly be needing brain surgery, I’m going to tell your surgeon not to bother scrubbing in, because, you know, not medically necessary.

Just when I feel like I want to wrap my arms around your little neck, you send me sweet love notes like the one I received today. You’re sending me a shower chair!!! I understand that sometimes you just need time to think through your decisions. Do you know what my people did while you were sitting around…. thinking? They built a house. Yup. That happened. I’m not holding a grudge though because I think you may have mentioned the shower chair is coming with chocolates and roses too.

I’m so excited that I decided to do something nice for you too.  I’ve always thought it was sad that we don’t have a song, so I asked my friend Pink to write one for us. I can do that because my brother opened for her so, no big deal.

I know it’s good times ahead for us.

love, me

(language warning because seizures and insurance make me swear. Also, subscribers will need to click though to blog to view video)

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Specialized Beds

One of the challenges of shopping for medical equipment is that you can’t just walk into a store, see all of your options and try them out. It frequently comes down to what your therapists and DME providers recommend. That speaks to the importance of having a knowledgable and trustworthy team, as I do.

It’s important to keep in mind that it’s not about which bed is best, but rather which bed is most appropriate. Kids have different needs.

Aidan has a Sleep Safe Bed because it’s most appropriate for him.

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There were three factors that were most important in choosing Aidan’s bed.

1. It needed solid safety rails all the way around. Because he doesn’t have great control of his body, there are spaces in a typical hospital bed that Aidan could (and did) fall through.

2. It needed to move up and down. When it’s low, Aidan can get into bed. Then we can raise it for changing and dressing him so we’re not breaking our backs.

3. Because we will move the height daily, it needed to be electric. None of this turning a crank business.

4. As a bonus, Aidan’s bed is full sized. I realize that seems like a bit of a luxury, and it sort of it. However, during Aidan’s surgery recovery process, we had to be so gentle when we moved him and it was all very awkward. We needed more space, and with another surgery in his future we will have it.  This bed will also keep him comfortable as an adult.

In our search we found some other beds that may be more appropriate for other kids. I’m including them here. I have no experience with them, but found the websites to be very informative.

Consider your possible need for seizure padding (Aidan has it), an IV pole, or a covered canopy.

  While The Courtney Bed would not be strong enough to contain Aidan, it seems more appropriate for a child who has better control of his/her body but would be in danger when s/he wanders off.

Beds by George is most similar to Aidan’s Sleep Safe Bed. It had a heftier price tag and the full size was not electric. It’s beautiful, though, isn’t it?

Kayserbetten Beds have doors that open to the side rather than a rail that folds down. While I’m not entirely sure of the benefit of that, I think it’s pretty cool. I didn’t get a quote, mostly because I had a strong emotional reaction to the look of it.

I had a great conversation with Jeremy Lucas at the Pine Tree Society. He and some volunteers build specialized beds. They work with you and your team to give you exactly what you need. Because this is a volunteer project, they’re able to keep the cost down. This would be my first recommendation to anyone gathering information. Unfortunately,  they only work with beds at a fixed height.

I hope this helps you in your research. While we LOVE Aidan’s Sleep Safe bed, it’s because it’s most appropriate for him. It may not be exactly what you need for your child.

Drum Roll Please

Last week I told you I would have some good news to share and today is the day. Remember the saga of Aidan’s bed and how insurance decided it wasn’t medically necessary and that they would much rather pay for trips to the Emergency Department when he falls out of bed? Remember how I wrote letters to the Governor and Senators’ offices and used words and phrases such as “reprehensible fiscal decision” and “unconscionable?”

Check this out:

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It’s Aidan sleeping in his swanky new Sleep Safe bed. Couldn’t you just eat him up?

I believe we each have a story and you never quite know how our stories will intersect. Turns out that our story unknowingly intersected with that of a very kind and generous family. Now, I can only tell you my story and even my parts of the story are precious in a you had to be there but I’m glad you weren’t because it was all the more meaningful to have a private moment with them kind of way. This generous family purchased the bed for Aidan. It’s fair to say that after my being stunned speechless and then bumbling like a fool, there were lots of tears. In another gift of that moment, our physical therapist who has worked with and loved Aidan from birth was there to witness this. She spends her days recommending equipment to families, often discouraged because she realizes it won’t always be covered by insurance. This family’s generosity was a gift of encouragement to her.

It gets better. I have to tell you part of the why. They said their days are better when they see Aidan. Can I even tell you what that does to my Mama heart? That’s a gift upon a gift. I believe that everyone has something to give. Let’s not lose sight of that. It may be time, resources, skill, encouragement, casseroles, or in Aidan’s case…joy. Aidan can give joy. I spend so much time making room for Aidan in this world and making noise about how smart he is. Turns out without me even lifting a finger, Aidan was seen and enjoyed. I love that.

Getting the bed for Aidan, knowing he will be safe each night, not having to fight harder for one more thing, that is clearly the best part of the story. But guess what? It gets even better. Our durable medical equipment guy (DME) was so encouraged by this story that he knocked a bit off the price of the bed. We’ve been a regular customer of his for years after having some challenging DME experiences at the beginning of Aidan’s journey. I know that he’s genuinely excited for us and he has been encouraged as well.

We’re not done yet. Remember the professionally composed nasty-grams I sent to the politicians? I followed up to say that Aidan received his bed. I also said that this issue needs to be addressed because it’s bad policy. I told them I want to be part of the change even if that means continuing to have this conversation until the right people hear it. Thank you to Governor Hassan’s office and Senator Shaheen’s office for listening to a lengthy explanation on my part, following up with the appropriate people, and offering next steps for me.

Seriously people, it gets even better. Students from a policy class at UNH heard about our story and decided to take this issue on. They will collect documentation and put together information to present to our legislatures. Making noise. The squeeky wheel. So many other parents paved the way for the life I live with Aidan and I feel hopeful that I can make some positive change for the next family.

I’ll just keep telling my story.

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IMG_6263Thanks Tom and Cory from Black Bear Medical for setting up the bed.