In the past we have been through similar moments like this with our own child who has a compromised immune system. When Addyson has been quarantined while being inpatient we couldn’t even go out of her room, take a lap around the floor, or go outside. However we always knew once her counts returned to a good level we would be able to revisit with the world (with precautions in place).

This is totally different feeling. The panic and anxiety is present. Im torn between enjoying the time to slow down and be present yet very anxious. Anxious about someone we know and love getting this virus. Anxious about how it will affect them. Anxious about going to work everyday to return home and possibly bring the virus home.
I feel some people are not taking this seriously. We have an immune compromised daughter and family over the age of 60. We are both fearful for our family of 4 and for our parents, aunts, uncles, etc. we are trying to remain calm and positive for the kids while fearful that since we have to work we could bring this home. 😦

With Addyson even simple gi bugs tend to land her inpatient. Simple colds send her back to the hospital for multiple days. We are so grateful that her care team has been great. They have called and checked in on her. They have offered video appointments when possible. They have emailed us guidance on mitochondrial disorders and covid19. Her pulmonologist has reached out to see how she’s doing with her asthma. Her cardiologist and Neurogenetics doctor have reached out. Both are pleased we have the NG and can push extra fluids as needed. Honestly it’s just a very scary time for many of our friends and family especially those who have medical complexities.