Essentially, SMA is the pediatric version of ALS (Lou Gehrig’s disease).
We were told that she wouldn’t live past 8 years old. She’s clearly blown right past that prediction – she is 18 now, and is an incredibly positive, optimistic young woman.
I’d love to say she hasn’t slown down a bit, but the truth is – she has. Erinne used to walk with the assistance of a walker, but the disease has progressed and limited her physical abilities. She now she uses a power wheelchair, needs assistance to feed herself and breathes with the help of a ventilator while she’s sleeping.
One of the challenges with this disease is managing Erinne’s pain. She has four rods in her spine and a dislocated tailbone that causes severe pain. We tried many avenues to manage the pain without much success until our care team suggested a referral to palliative care services.
Last Christmas Eve, after more than 20 days spent at daughter Hannah’s bedside, Marsha and Tommy Coulter were called into a Texas hospital conference room faced with an unimaginable decision.
“The doctor asked us to consider taking Hannah off the vent and letting her go,” Marsha Coulter remembers. “It was one of the worst days of our lives. The worst Christmas Eve we could imagine. We cried all day and night. I begged God to keep this from happening. We were just hoping for a miracle.”
For 14-year-old Hannah, every breath was a battle. A lethal combination of a small chest cavity, an artery pushing up against her trachea and a rare, life-threatening disease that weakens the windpipe called tracheobronchomalacia had made breathing and eating increasingly difficult for the teen, who also has autism. Other surgeries hadn’t helped and few options were left.
For many patients and their families, the care they receive from C.S. Mott Children’s Hospital and Von Voigtlander Women’s Hospital nurses is transformative. We hear time and time again how families’ experiences – with the individuals who are on the front lines right there alongside them, advocating for each child’s unique situation – have touched their lives.
What you may not know, however, is that these experiences are often equally as transformative for our nurses. Nurses feel the highs of a patient’s triumph and the devastating lows of hearing news you had hoped you would never hear.
If you’ve ever had a loved one in the hospital, the thought of sending flowers may have crossed your mind.
One group of volunteers at C.S. Mott Children’s Hospital and Von Voigtlander Women’s Hospital understands the power of flowers particularly well, and takes the sentiment to a whole new dimension with their flower therapy program.
Every other week, from September through May, a group of dedicated volunteers known fondly as the Flower Ladies fills the hospital’s Family Center with the delightful sights and smells of fresh flowers.
What the Flower Ladies know, that many families are surprised to learn, is that flowers can be a lot more than decoration for a hospital room shelf.
Sixty percent of all vehicle crashes are caused by distracted teenage drivers. The stakes are high – but there are a number of things parents can do to prepare their children to learn to drive and help them learn safe driving habits.
These injectors, like other epinephrine injectors, are used to treat life-threatening allergic reactions (anaphylaxis).
Families of patients who currently use the Auvi-Q as their auto-injector should contact their physician immediately to arrange for a prescription to one of two alternate epinephrine auto-injectors (EpiPen or Adrenaclick). University of Michigan Food Allergy Clinic patients can contact us directly at 888-229-2409.
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