Joshua Vickers' Stroke

Joshua was discharged from the hospital October 20th, a Thursday evening.  He had a moment of anxiety, leaving such a safe place and a whole other world he got used to living in.  After talking with me, a nurse, and Rodney, he felt better.  At least enough to give it a go.  He hasn't looked back. Ready to go. Trips to the car Wheeling himself out.  He could walk well in his brace at this point but he was tired and we wanted to be safe. Walking the grandparents' puppy.  Great therapy! Adjustments to home and a different kind of busyness (closer to regular busy family life) have pursued.  Everyone's doing well.  Outpatient therapy and education have been the recent bigger changes. Again, thank you for your generosity, thoughts, and love! 💜 

My phone isn't letting me add pictures recently.  I think my laptop will but I left it at home. Less busy evenings at the hospital have become a good time to update my notes, the blog, etc.  So, YES, I'm doing this all via swipe on my phone. Oy, finger cramps. I plan to share what's been happening at home.  I also want to give more detailed updates of the goings-on in the past weeks, especially the first few days.  So look for those posts.  Maybe not soon and definitely only after I get home in a day or two with a PC or laptop.  But by 2023, they should be posted.  😄

We were told a week ago that THIS FRIDAY, Oct 21, would be Josh's discharge date, meaning we could take Josh home and transfer to outpatient care! But apparently, his physical therapist says he's ready to leave sooner!  So we'll meet with a doctor tomorrow to have "formal education" on everything we need to know to care for him on our own.  Then, depending on how we feel, we get to decide if we're ready to take him home tomorrow or Friday.   The end of Joshua's inpatient hospital stay is fast-approaching! 🙌 Of course, this means many changes, much learning and research to get the best care we can.  And more work on Joshua's end plus many more appointments. We're not out of the woods yet.  Every week seems to bring its own ups and downs, challenges and triumphs.  But we're elated to see such continual progress.  Josh has worked hard and has much to be proud of!  His therapists and nurses simply love him, his positive attitude, witty remarks, ...

I admittedly don't know as much about NF1 as I feel I should know at this point.  In-depth research is forthcoming.  What I do know is it's a genetic condition, though it's not passed down from Rodney or me.  I think it's from a mutation in the NF1 gene.  It's the reason behind Joshua's stroke, thus the need for a blood thinner like aspirin to prevent future strokes.  There's much more to it but that's the gist.        Joshua's had more tests connected to NF1.  The results have shown that he has an optic glioma/small tumor? (at the optic chaiasm, the crossing of the two optic tracks) and a couple nerve sheath tumors on his spine.  This means he'll need to have continual follow-up care in the near future and throughout his life.      We've all had a lot to process, especially Josh. He was told pretty early on that he has a 50% chance of passing NF1 to his children.  That was one of the biggest blows for him....

I posted Joshua's schedule in a previous blog post but to make it easy, for those interested, the best VISITING HOURS are...     11:30am - 2pm     3:30/4pm - 8pm It'd be best to text or call one of us, to make sure something else hasn't popped up on the day you'd like to visit.  But VISITORS ARE WELCOME.  Thank you!

Joshua has had multiple visits and outings, at this point.  The first outing started with the gym for therapy last Thurs or Friday.  Then we were told about the family/ride pass.  We thought it would only be Saturday afternoons/evenings and Sundays because there's no therapy then.  But he's had more opportunities than that already!  His first visits were from a good friend, two of his grandparents, and his siblings.  Since those first visits... Saturday YM/AP group visited in the morning Uncle Nano/Nate visited for much of the day and evening.  His cousin and sister visited that evening too.   Sunday My cousin, Brady, was able to visit in the morning. Church, Sacrament Meeting.  We heard that church here is something else, like it's condensed in both time and spirit.  We found that to be true from our first time going.  It really put our experience into perspective.  I think it profoundly impacted all three of us (Rodney, ...

Joshua is continuing to progress and becoming increasingly independent.  His spirits have been good and seem to have improved a bit each day.      His typical daily schedule: 9-11 Therapy (physical, occupational, speech) 11 Education to start T/Th 1-2 Teen Room (pinball, air hockey, foosball, etc) 2-3:30 Therapy (physical, occupational) 3:30-4 Music Therapy M/W Visitors, meals, and personal time all get squeezed in there too.  He's definitely staying busy, which is good.  Once he's walking around enough, they'll take him off a stronger blood thinner, which is helpful when a patient is sitting or in bed a lot to prevent blood clots. Physically, he's started getting himself to the bathroom and back all by himself, with the use of the wheelchair or the walker.  When riding the therapy bike, they unstrapped his right foot, which is a great sign of improvement.  He pushes himself longer distances in the wheelchair.  He's started attempting to writ...

I've been asked for a physical mailing address to send Joshua a card or letter to his hospital room.  I'm posting here for anyone who may need it.  It goes to Primary Children's mail room then having his name and room # ensures it will reach him.   No pressure but I'm sure he'd love receiving mail, especially now that it'll be a longer stay.  Weeks instead of days.  Thank you! 💜 100 N Mario Capecchi Dr SLC, UT 84113 Joshua Vickers #2033

I realize how long I've left everyone hanging so, before I finish detailed updates from the beginning, I'll summarize recent happenings. Joshua lost many of his abilities in his right side.  It's called hemiparesis or hemiplegia .  He's had tingling, numbness, and weakness since this all started over four (long) days ago. His face has been mostly numb and it's made his speech a bit more mumbled and some more stuttering than usual.  His right arm and hand have been mostly tingly, kind of like pins and needles, but he's had the most strength there since the beginning and it's improving well.  His right leg has felt all the sensations but has improved quite well too, especially when sitting.  His right foot has been the weakest from the beginning and I think he has what's called "drop foot", which means he has difficulty lifting the front part of his foot which is so important in walking.  This is normal in stroke patients and there are tools a...

Our oldest son, Joshua (16), had a stroke on Monday, October 3rd, at school.  He called me saying he was partially paralyzed so I took him to Layton Hospital ER.  After many tests, he was taken to Primary Children's Hospital and Rodney rode along. I met them later in an ER room, where a neurologist had told Rodney that Josh had a good chance of an eventual nearly full, even 99%, recovery. We were soon transferred to the ICU, where he stayed for over a day and had many more tests and meetings with doctors and specialists. After ruling out heart issues and from findings on an MRI plus a clue from my dr. brother, it was discovered that he has a genetic condition called NF1 or neurofibromatosis, which can cause strokes.  In the long run, aspirin will hopefully keep future strokes at bay.  But many questions are yet to be answered and treatments yet to be discovered. We've been told he'll stay at least a few more days or until he can stand and walk, with support.  Th...