Breakthrough

Breakthrough

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Lately, that’s been a buzz word when it comes to COVID,the vaccines and breakthrough infections.  I used to associate that word with religion and the advancement of desires and “answered prayers”.  The meaning of breakthrough is any significant or sudden advance, development, achievement, or increase, as in scientific knowledge (dictionary dot com).  More recently on my adult life, I have associated  the word with my daughter having “breakthrough seizures”. 

Kerstin has a vagal/vagus nerve stimulator or VNS; she is also prescribed 4 different seizure medications.  Before the VNS was implanted she was on meds only and had breakthrough seizures and some would get really bad; talking full tonic-clonic or grand mal seizures.  We were advised by her neurologist that the VNS would be a good way to help reduce her seizures without adding more medications that would have her so sedated that she would be sleepy most of the time and not very alert.  Yes!  We wanted that option and Kerstin was implanted in March of 2019.  

Kerstin’s seizure activity has gone down tremendously.  However, she still had seizure activity and from time to time, seizure activity becomes visible.  They have not turned to a grand mal.  Kerstin’s last grand mal was in the parking lot of a Walmart; February 2019, one month before her VNS surgery.  

Breakthroughs happen.  Have they been has horrible as pre-VNS?  No! Thankfully, no! Should I stop her meds or have the stimulator removed because she still has very sporadic breakthrough seizures?  Hell no!  The breakthrough seizures don’t have my child convulsing then leave her sleep or out of it for up to 24 hours afterwards.  

Back to that breakthrough definition; scientific knowledge tells me that there is a possibility of seizures but, they are not like those before Kerstin was medicated and implanted - had a layer of protection.  

These days, layers of protection are critically important to me for my family.  I have a child with a very complex medical history and protecting her is important to me.  

😷 💉 

#MaskedAndVaccinated

COVID-19– Fears of navigating a post mask mandate era and re-openings with a child with a complex medical history.

 

This past year of living through a global pandemic has been difficult for many people in many ways.  Not having the usual contact and personal intimate interactions with others can become very lonely over time.  We are human beings and the connections to other people are what keep us going, provides support when it is most needed and provides comfort.  When we are having a hard day, or when we have had a really good one, we instinctually want to gather with family and friends to share the news.  Gathering, is one of the things we have been repeatedly told NOT to do in the midst of the coronavirus pandemic.

 

Watching the news, hearing reports on the dangers of the virus and how it affects the lungs, I became immediately attuned to learning what I could about this COVID-19.  I needed to know what could be done to keep my daughter safe and healthy as well as myself.  My daughter, Kerstin spent weeks spread over months in and out of the Special Care and Pulmonary Units of Children’s Hospital of Alabama in the late Summer and Fall of 2019 then again in 2020 with respiratory illnesses.  During these stays, Kerstin required and was placed on High Flow Oxygen for several days at a time for each of the four separate stays.  I don’t want to spend days and nights inpatient watching my child be hooked up to numerous machines and needing that higher flow of oxygen anymore.  We just spent about a week of her on what they call an “at home regimen” and was told that if she continued to have low oxygen saturations, she would need to be seen at the hospital.  Thankfully she got through that and has not been on supplemental oxygen in 5 days now.

 

As we continue to traverse through the COVID pandemic and vaccines have rolled out and some have been halted for further research; the world seems to be completely done with everything “coronavirus”, “pandemic”, “virus”, “mask”, “social distance”, “physical distance” and “safer at home”.  Re-entering the world is not the same for everyone!  There is no going back to “normal” or “business as usual” for many people.  Like grief, going back into the world with a deadly virus still ravaging, mask mandates ending (ended here in Alabama) and, a low percentage of adults being vaccinated (again, AL), it will look and feel differently for everyone.  Some people are eager to go mask-less, some cannot be vaccinated for medical reason, some will not be vaccinated for whatever reason(s).  Whatever the reason, I will not judge them and would hope that my decisions to be vaccinated, to remain distant and masked are for the health and safety Kerstin and other people considered “vulnerable”.

 

As we continue to push through to the other side of this virus, please continue to listen to sincere and trusted medical professionals, respect the personal spaces of others, wash your hands and wear your mask.  We will! 

Kerstin, wearing her mask!

 

“You really can change the world if you care enough.” –Marian Wright Edelman