How Important Is Sleep Anyway?

Action 4 Ashton > Duchenne Life > Equipment > How Important Is Sleep Anyway?

Of notable interest, Ashton was diagnosed with idiopathic toe walking, had surgery to treat a spiral femur fracture, was considered near the end of being ambulatory and required heel cord lengthening surgery for his fixed contractures (feet looked like stuck in a pair of invisible stilettos) prior to his diagnosis of Duchenne muscular dystrophy at age 4.

I am just a mom without any medical degree, training or fancy letters behind my name. Yet, I can clearly see with my naked eye kyphosis developing in my thirteen year old son’s thoracic spine. He was born with the X-linked genetic illness, Duchenne muscular dystrophy, a progressive muscle wasting disease due to a mutation in the largest known human gene (DMD) preventing the protein dystrophin being produced which is necessary to maintain, repair and build muscle. Dystrophin is primarily located in skeletal and cardiac muscle though it is also found in nerve cells of the brain.

I am alarmed both to see this and to find out that his many person multi-specialty medical team which he sees on a frequent basis are not proactively concerned enough about this. Even more alarming is that his complex rehab medical equipment provider is not processing the medical equipment prescribed to him which should hopefully alleviate some of his constant pain in back, hips and butt in a timely manner nor are offering any alternatives during their delayed processing time. These things take time. I get that. Seriously, it really requires 9 months just to put together and submit a prior authorization for a wheelchair? How should Ashton be living in the meantime?

Ashton has not been sitting in an appropriately sized, working or comfortable wheelchair with support features for proper posture, support and prevention of continuing fixed contracture to knees and hips as well as pressure sores going on three years now:(. I really hate to share such private photos publicly but this needs to be seen and my son’s pleas for comfort and relief need to be heard by more than just me.

My Uncomfortable Fixed Position
Do I look comfortable to you?
Ater Legs Pulled Straight
How about with my legs straight?
Side Laying
This is laying on my side!

First, you see Ashton’s natural position when lowered by ceiling lift into bed. Does this look comfortable to you? Would you be able to sleep like this all night? Could you function at your best the next day?

Secondly, you see after I stretch his legs out upon Ashton’s request. You can tell by where his feet are on the pillows that there is very little difference or stretching occurring. Ashton’s knees are in a fixed contracted state. It is no surprise that his hips are constantly hurting.

Thirdly, you see Ashton trying to get a bit of pressure relief off his back and butt by laying on his side which is hardly side lying at at all but as close as he can get.

Ashton has a cooling gel infused foam topper purchased new from Kohl’s on top of his basic Solace hospital bed mattress purchased used from Craigslist as well as a body pillow for one side and throw pillow for other side that is switched up every night, sometimes even during the night.

Ashton was recently prescribed lidocaine patches for his back pain after no signs of compression fractures were noted in spinal xrays. He does not like the feel of them and the edges get wrinkled during the night but they seem to offer just a bit of comfort taking the edge off his pain so he can fall asleep. His spinal xrays did reveal that his scoliosis curve progressed 10 degrees in just one year. The position on his back where he wants the lidocaine patch placed is just over the hump of his developing kyphosis or hunchback.

It really is quite sad that a children are expected to suffer through many daily pains and function normally without proper sleep due to not having access to the proper complex rehab medical equipment. What can a family do to expedite the timely processing of medical claims? How can you obtain the necessary custom equipment for your child when household long term full-time income, no gap group medical insurance coverage primary through employer, Katie Beckett Medicaid secondary and Children’s Long Term Support Waiver as backup fail? How do you overcome Medicare guideline which deem the nedessary equipment your child needs is not medically necessary?

Speaking of that, can someone please explain to me how Medicare which was created to insure that regular healthy seniors have access to medical coverage has any business dictating what severely ill children need and do not need as far a medical necessity anyway?

In the short term, a lack of adequate sleep can affect judgment, mood, ability to learn and retain information, and may increase the risk of serious accidents and injury. In the long term, chronic sleep deprivation may lead to a host of health problems including obesity, diabetes, cardiovascular disease, and even early mortality.
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