Well, it has been a very long time since I wrote a blog or made a vlog.  The last couple years of our lives have been filled with a decent amount of upheaval.  That upheaval often led to a desire for more family privacy.  Now that we’re a couple years into things, we’re ready to share.

On July 22, 2022, at the age of 17, our oldest daughter, Alex, passed out at cheer practice.  Her coach called an ambulance and called us, so we met them at the hospital 45 minutes away.  We had been going through a great deal of extremely hot weather, so the hospital chalked it up to the heat and being dehydrated.  Charlie, Alex, and I really questioned the dehydration.  She had been diagnosed with dysautonomia when she was 12.  The recommended treatment for dysautonomia is to, “Eat more salt and drink more water!” as I like to say, so Alex was pretty good at staying hydrated at eating salty snacks.  Needless to say, she was sent home that night and just told to try to stay cool and drink plenty of fluids.

The next day, she was sitting in a chair at the table when she just slumped over unconscious.  We carried her to the couch and tried, unsuccessfully, to bring her back to consciousness.  EMS was called, and she again was taken to the ER, albeit a different hospital. 

They kept her for a while but couldn’t find anything wrong with her, so she was sent home.  We didn’t make it very far down the road before she was passed out again, so we turned around and went back to the hospital.  The doctors there decided to send her to a children’s hospital to be admitted for more extensive tests.  None of those tests came back abnormal.  Nurses were even able to witness her going in and out of consciousness for hours, but we were still discharged a few days later.  I asked what the situations were in which I may need to bring her back to the hospital, and they told me only to bring her back if she was struggling to breathe.

For the next 10 months, Alex passed out every day, multiple times a day, without any warning.  She could be standing there having a conversation with you, and the next minute she was on the floor.  She might be laying down on the couch, and then she was out.  There were many days when she was in and out of consciousness so much that we struggled to be able to get fluids into her – literally conscious for a few seconds before she was passed out again.  We didn’t leave her alone.  She had an escort to the bathroom who waited right outside the door and often carried her back to her couch.  The medical system wasn’t much help.  Fortunately, there was a dysautonomia “clinic” made up of doctors of various specialties that I had managed to get Alex on the waiting list for in May of 2022.  Her appointment wasn’t until the middle of October, and that appointment was only for an intake!  The pediatrician that we saw there was great at listening to us and giving us some ideas of how to treat her and such, but none of it helped.

Next we applied to go to the Mayo Clinic in Minnesota and received an appointment in December of 2022.  Can you imagine a bunch of South Carolinians heading to Minnesota in December?!  While we were there, she was diagnosed with POTS.  We were given some “tools” to help her feel better: add electrolytes to her water (it’s pretty much impossible for her to have too much salt), wear compression socks and leggings to push the blood toward her head, and try to exercise.  Alex had always been active, but it wasn’t very easy to have her exercise anymore when she couldn’t walk anywhere without passing out.  Then we looked into physical therapy.

The physical therapy helped her to feel better, but she continued to pass out.  The Mayo Clinic suggested that she might be a good candidate for an outpatient clinic that they held, but then they decided not because they wouldn’t be able to follow her around and keep her “safe”.  The next recommendation was an inpatient clinic.  After lots of research, I was only able to find three hospitals that would take her as a pediatric POTS patient for inpatient services.  We decided on the Shirley Ryan Ability Lab in Chicago because they were the first one to get us in. 

Alex checked into Shirley Ryan at the very beginning of May and stayed as an inpatient for three weeks.  I made it to Chicago after she had been in there for a few days (Charlie was with her initially).  On a board in her room was a list of goals.  One of the first goals was “no passing out for 2 days.”  I looked at that and laughed, sure that she wouldn’t meet that goal.  Needless to say, she did.  After 3 weeks of inpatient care, she also had 3 weeks of outpatient care.  By the end of our 6 weeks in Chicago, we were walking around the city doing some shopping and seeing the sites.  This didn’t mean no passing out; she still did from time to time.  But we were able to get her to the point where she could recognize how she felt and try to take measures to avert passing out.  Worst case, she was able to get herself into a sitting or lying down position where she wouldn’t likely injure herself by passing out.

Two years later, we’re probably in about the same place as we were when we left Chicago.  She is much more independent but definitely has more limitations than the average 20 year old.  We are so grateful to be at this stage of her health journey, having made so many improvements, to give her a better quality of life. 

That first year dealing with Alex’s health was a very trying time in our family.  The stress that comes with unknown medical conditions and/or medical conditions that don’t have much treatment can really take a toll on a family.  In that first year, I was very impressed with how my children handled it.  They were so compassionate with Alex – willing to get her whatever she needed or help her get to wherever she was going.  Homeschooling wasn’t easy for anyone though (and didn’t even happen for Alex).  Charlie still had to work but tried hard to find extra time to get her to doctor appointments or just take her with him to work so that I could have a day at home focusing on homeschooling.  My spending 6 weeks in Chicago, away from the rest of the family, was another huge stress.  My days while Alex was still an inpatient were spent homeschooling kids over FaceTime during the day and playing Phase 10 with Alex in the evenings.  Thank our blessed Lord for the Ronald McDonald house in Chicago for giving me a safe, comfortable place to live for 6 weeks.

Anyway, this is nowhere near the end of our family saga.  Stay tuned for the next turn of events.