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.

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Hospitals and Demolitions

Garreth came down to the hospital yesterday to spend the weekend. Aidan, who has been in a drug induced haze since tuesday and has mostly grimaced at me in pain, mustered the strength for a beautiful smile for Daddy. Whatever. Almost as soon as Garreth arrived, my body shed it’s last bit of energy. My cousin arrived around the same time and offered to stay and feed Aidan while we went out to eat. Aidan did a great job eating and drinking so he’s on the right road. I barely made it back to my bed by 8pm. I slept hard and am ready to tag team with Garreth today.

Aidan just woke this morning at 10am. He’s still pale and his heart rate is still high but his temp and swelling are finally coming down. We’ve been going though the cards that his classmates sent to him and he’s been reaching and smiling a little. Today’s big task is to take his nasty gross meds all by mouth. Of all the brilliant things scientists have done, why has no one invented yummy medicine? For the curious of mind – Valium tastes like a mix between black licorice and Jeagemeister.

I’m incredibly grateful to the friends who got Aidan’s medical equipment from point A to point B. It was a huge hassle that was not at all Children’s fault. The nationwide DME company they used doesn’t contract with them anymore so they have to use local vendors who of course don’t go to Boston and the Boston PT needs to try out the wheelchair and train us to use it properly. The more I’ve been watching his care in the hospital, the more I realize there is no way I can do this alone at home. I held off on getting nursing hours but it’s clearly a two person job. I’ll be fixing that on monday.

Back on the home front, the front of our house is being demolished this weekend. I don’t know the who or how or what of it, but I know it’s being handled. I did my part already – I wrote on the walls, mostly song lyrics this time. Ironically, there is construction being done on our floor of the hospital as well. I wrote snippets from these songs (subscribers will need to click through to blog to view):

Don’t keel over now
Don’t keel over
Don’t keel over now
Don’t keel over

And in one little moment
It all implodes
This isn’t everything you are
Breathe deeply in the silence
No sudden moves
This isn’t everything you are
Just take the hand that’s offered
And hold on tight
This isn’t everything you are

There’s joy not far from here, right
I know there is
This isn’t everything you are

Snow Patrol

****** You can follow more about our remodeling project at bowiehouse.

Humbled, Grateful, Amazed

My response to an Invitation to Community

It’s humbling to ask for help, but another thing altogether to receive it without even asking. Believe it or not, it’s a bit awkward….and wonderful, and beautiful, and overwhelming.

“What about the starving children in Africa? How about the other Medical Moms facing similar journeys? Wouldn’t you rather just bake me a casserole?”

In the midst of Aidan’s medical trials, I’ve worked hard to practice the posture of gratitude, holding tightly to small things while experiencing great pain. I don’t simply want to count my blessings; I want to grow a space in me where contentment has a stronghold.

I’ve become convinced that joy and pain draw from the same well and join forces to make it deep and overflowing. I will not ignore the difficulties that are very real in caring for Aidan, nor will I downplay the very scary fact of his intractable Epilepsy. But gratefulness, simple treasures, truth telling, inexplicable peace – they hold my pain and help me bear it with grace.

And here I’m being given a gift that reverberates gratitude, something amazing and easy to recognize as wonderful: safe, accessible housing for Aidan and peace of mind for me.

But it’s so dazzling that it may distract me from the bigger offering: community. We all know we’re built to be in relationship and that’s why I’m so excited about this project, to have my life intersect with so many others. I want to hang sheetrock together and hear your story; I want to care for you in my baking; and, oh, wait until you hear my plans for tearing down walls. I want you to meet Aidan, hear him giggle, realize that disability effects the whole family, see that Epilepsy is personal. We want to be part of your story as you will be part of ours.

This is the deep well; this is the richness of doing life together; this is abundance…. and it feels very much like thanksgiving.