They had dealt with a lifetime of hospitalizations due to Rebecca’s CF exacerbations, and they knew how to handle a hospital stay. Rebecca would bring comfortable clothes and snacks and sometimes they would watch a movie on the laptop. However, this stay was different. Earlier on, the doctors did not know if she would survive more than a few weeks.
“Comfort became much more important,” Ray says. “We spent 219 consecutive days in the hospital with the unknown hanging above our heads. We had to up our game.”
The pair has been working toward sharing that knowledge with other families through something they’ve named “The Hospital Comfort Kit.”
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Friends would often ask if they needed anything and Ray would struggle to think of anything. “I would almost feel bad because I knew they wanted to help but even after all of our years in and out of hospitals, I couldn’t come up with anything. They would usually just send flowers or candy which was appreciated but not particularly useful,” Ray says.
After a few months, they tired of candy and after her transplant Rebecca could no longer keep cut flowers in her room because they increased the infection risk.
Earlier in her stay, Rebecca had been in a chemically induced coma for 6 weeks and awoke with severe muscle atrophy. Ray noted that being on a ventilator didn’t help her mobility either. “She had this backscratcher that she always kept in arms reach. It provided a little bit of independence for somebody that wasn’t strong enough to stand on her own. I could imagine how tough it would be to have an itch you couldn’t scratch. Between that and her lip balm nearby, she stayed comfortable and even self-sufficient.”
At this time, sponge baths were the only option for cleaning and required quite a bit of energy on her part. The couple soon learned the convenience of having some wet wipes nearby.
Clearly determined, Rebecca worked daily to build her strength. Like many who rely on a ventilator for every breath, she struggled with anxiety. That was roughly when a Bluetooth speaker from an old friend arrived and provided a surprise benefit. They found that playing Nora Jones was a way to calm Rebecca’s nerves during the day. Anxiety is all too common for those who are as sick as she was. After her day’s work was done, they would often end the evening with a little dark chocolate. Then at night when the hospital noises became more noticeable, listening to an app with outdoor sounds helped her fall asleep more easily.
With her health deteriorating quickly, they tried to make the best of each interaction with the staff. To remember all of their questions they always kept a pen and pad nearby. With the concerning nature of her condition, it was important not to forget a thought or idea. In addition to that, it was often necessary for them to communicate with each other. While on the ventilator, Rebecca was unable to speak and would often need to write notes to Ray.
Now three years later, they look back on all that they’ve experienced and learned and want to share it with others. Their new Hospital Comfort Kit is the result of this goal. It includes an insulated cooler, water bottle, backscratcher, lip balm, a Bluetooth speaker, body wipes, a notepad & pen, and dark chocolate bar. Each and every one of these items served a role in keeping Rebecca more comfortable during those challenging times. It also includes what they’re calling the “Hospital Survival Guide” with suggestions for other items to bring from home and to request from the staff.