Thank you so much to those who were able to join us last Friday for our first MTM-CNM
Connection!! We were thrilled to have MTM-CNM families join us on Zoom from such “exotic” locales as their living rooms, back porches, basements, home offices and more!
After checking in and introductions, families began to describe how COVID-19 has affected their circle of friends and acquaintances or even themselves personally. While all of us are seriously following the guidelines about social distancing—which is not a huge departure from the community’s normal practice during the regular cold/flu season—there is variability in the community due to different circumstances. Some of us are essential workers who still need to go in to work, whereas others are able to work from home or even take a temporary break from work. Families are also adapting—for better or worse!— to the dynamics of kids being at home all the time and the challenges of staying on-task with virtual learning.
With regards to medical care, families have been communicating with their doctors to negotiate a plan should there be a suspected COVID-19 exposure or illness, or where to go if hospitalization should be needed. There is a consensus that care is best managed at home as much as possible. Some helpful suggestions from medical specialists who work with medically complex patients and tracheostomy experts were shared. We talked about having oxygen tanks or oxygen concentrators for those who don’t normally need oxygen support but who would likely need it if they became sick with the virus.
One benefit of these stay-at-home policies is the transition to telemedicine for routine doctor visits. It’s much safer and more convenient for our families, and many of us would like this option to be available not just during a pandemic. On the other hand, and not that surprisingly, virtual physical and occupational therapies do not seem as effective as hands-on therapy. Some families shared that they have cancelled nursing services at this time to lessen the risk of exposure to COVID-19, while some feel that having nurses is an acceptable risk, particularly if the nurse is strictly following social distancing guidelines and has no interaction with other cases. Points of ongoing advocacy regarding nursing pertain to agencies not “penalizing” families for cancelling nursing services during a time of crisis as the current pandemic and for agencies to provide adequate PPE (personal protective equipment) to the nurses as this is an area of massive deficiency.
We find families are being protective about our loved ones’ ventilators and backup vents; some expressed an increased sense of awareness about neighbors and others having knowledge about the type of medical equipment we have in our homes. As we had cautioned in early March when we advised rationing supplies, families are being affected by back orders on essentials like ventilator circuits and humidification water. However, in a time when we see a lot of unethical profiteering, it’s heartwarming to see how families in our vulnerable community are caring for each other, being supportive, and sending each other needed items as we are able.
As always, we appreciate how the love and care within our MTM-CNM families spills over into consideration and assistance for our broader MTM-CNM family. We hope to continue being a part of that by continuing to meet virtually and following up conversations like these with relevant resources and suggestions in our
MTM-CNM Family Conference Facebook group
In that spirit, we’d love for the families in our community to gather for another virtual meetup next Friday, April 17 at 3:00 pm EST! Please RSVP to email@example.com and we will send families the Zoom login information for the meet up!