Despite our best efforts, COVID19 entered our home these past several weeks and hit Daddy Joe real hard and knocked Emily down, but not out. Taylor-Jo and I were asymptomatic at first and then had mild symptoms.
Below is what we had been doing and continue to do because not everyone chooses to wear a mask to help protect others like our Emily who is immune suppressed. We also have been remote learning since March and continue to do so this school year, limit family and friends to only a select FEW adhering to CDC guidelines before, during and after these short visits that have been few and far between if at all.
Before COVID-19 we have taken precautions all of Emily's life. Emily was born premature and we had home precautions in place from the get go before she was even diagnosed with SIOD. Here are our health and wellness practices that we have instilled for her entire life and depending on what virus or season of illness presented itself, we would step up our precautions accordingly:
*remote healthcare
*wash hands with soap and water for 30-40 seconds
* avoid crowds
*limit public interactions
* wipe down knobs, handles, keys, remotes, phones
*change clothes after being out in public or after school
*shower after being out in public or after school
* Lysol purses, backpacks, bags
* wipe down steering wheels and doors handles
*wear masks in public
*UV light to clean controllers, laptops, keys, phones
*take shoes off at door
*limit visitors
The CDC states that, "serious underlying medical conditions (like SIOD) are at a higher risk for more serious complications from COVID-19", and we do not take that lightly as we have family members and friends as well who are immune suppressed due to cancer, transplants and other health issues that qualify them without being of the older population.
Children with SIOD, and really any chronically ill child, become resistant to effective strains of defense over time as they are used to these lines of medications in their medical journeys and therefore even a cold can be detrimental to them.
Gene Reviews/NCBI has a publication with Morimoto & Boerkoel (both from Canada during our initial research) Lucke of Germany and yes, Lewis from Stanford even before he took over the SIOD research from Boerkoel, where they talk about T Cell deficiency first published in 2002 and updated in 2016. "Immunodeficiency increases the risk of opportunistic infections such as pneumonia. More than half of individuals with SIOD have recurrent infections with bacteria, viruses and fungi. Infection is a common cause of death."
After a few ER visits and lots of tender loving care, medications and conversations with Emily's doctors at Nebraska Med and Stanford we know things are improving and better than what they could have been. We are thankful for that.
Emily got her IVIG today and labs so I will be interested to see how those are today as she improves.
