Merry Christmas

What a difference a year makes.

Last year I was grateful that my dad was alive, off the ventilator, and out of the ICU.

This year I am grateful that my prayers were answered and my dad has become a picture of amazing health, that we have spent the past year healing altogether as a family.

My dad is enjoying his time taking walks and visiting with the kids.  He still works out almost every day but has now transitioned from Gold's Gym to a home gym in the basement.  He had all the equipment (and a really nice set) so it makes sense to use it.  He continues to pick Zoey up from school, which is a special treat for them both.  And medically he has had no issues since we increased the Keppra back to 1000mg after the bout of seizures a couple months ago.  The only thing is that he doesn't sleep great at night, so this week we are tapering his Prednisone down from 9mg to 8mg to see if that might help.  I know a lot of people who take daily steroids can sometimes have insomnia, so we'll see how that goes.

But I really couldn't ask for anything more, I feel so blessed to be rewarded with such an amazing Christmas and wonderful family.

11/3

He's home!

Luckily Dad only had to spend one night in the hospital, we got to take him home the next day.  What a relief!  Everything pointed to seizures, which is an easy fix.  The EEG showed some activity that was consistent with that and everything else was negative, except that his TSH (thyroid stimulating hormone) was 5.6.  This just means that he needs to increase his thyroid medication, Synthroid.  So we put his Keppra (seizure medication) back at 1000mg, which is where it was from December to August.  We had only recently decreased it to 500mg.

The first day home was a readjustment and he still had some tremors, we were waiting for the medication to kick in and for his system to basically "reboot".  The brain is a complicated thing.

He's great now though!  Completely back to normal and doing wonderful.  He will have an outpatient 24-48 hour ambulatory EEG at some point, which basically means he just has to wear electrodes on his head for a day or two at home for a more in-depth study of the electrical activity of his brain.  Honestly I don't know if it will be all that useful.  We already know he had some seizures and now he's taking medication to control that.  We'll see.

Tomorrow we're all going out to dinner to celebrate Uncle Scott & Marty's birthdays and Dad plans to hit the gym again Monday.  I know he's looking forward to getting back to his routine again.

10/30

I haven't updated for so long on this site because things have been going so well, I hate to have to make a post about another hospital admission.  The past 6 months have been wonderful and my Dad has been doing spectacular.  Fully functional, active, and independent.  Hitting the gym hard 4-5 days a week at 4am sharp, doing a lot of weight lifting and cardio.  Eating healthy.  Driving Zoey back and forth to school.  This past summer he did a lot of yard work both at my house and Meme's.  Most recently he came over to go trick-or-treating with the kids for Halloween:

So we're looking forward to him getting out of the hospital and back to doing all those things again.  He has been admitted to the neuro IMC for seizure testing / observation.  

He woke up this morning feeling fine but then tried to turn on a lamp and noticed loss of dexterity to his left hand and overall feeling off balance.  I went right over and noticed he was presenting very similarly to his episode last April, however the symptoms weren't as bad this time.  He had a very mild weakness to the left hand, a bit of a left arm drift, more of a left visual field cut than normal (he still has some residual left visual neglect from April), an unsteady gait, and stated he was seeing an aura of colored lights.  No slurred speech or facial drooping, and it did not affect his lower extremities.  

By the time we got to the hospital the colored lights aura had disappeared and he was getting stronger in his left hand.  He had a CT scan, which was negative.  He had basic bloodwork done, which was all fine.  He had an MRI, which is unchanged from his last MRI from 2 months ago.  

Then after the MRI he had one of the most unique seizures I've ever seen, it was focal to his left abdominal area.  It was painful and at first looked like cramping, but then there were very clear and obvious fasciculations to his abdominal area.   It sort of looked like an alien was doing a very weird rhythmic twitchy tap dance inside.  He had a couple episodes of this while a few of us were in the room trying to determine what was going on and I said "Those look like seizures!!".  Sure enough it spread down his leg and up his arm.   We gave him some Ativan, which he immediately responded to and the seizures stopped and *knock on wood* hasn't had any seizures since then.  Afterwards he told me during the seizure he saw the colored light aura, which is also consistent with a seizure.  The neuro team came to see him afterwards and I asked him if abdominal seizures are very common, because I've heard of them but never seen one.  Nope, yet again my dad has something "very rare".  Go figure, we always knew he was one in a million!

In the past couple months we had been decreasing his anti-seizure medication (Keppra) because he hadn't had any seizure activity in so long.  It was a reasonable thing to try.  However it looks like he still has a lower seizure threshold and that he needs the higher dose to keep things at bay.  I've been reading a lot too about how lower barometric pressure can affect people, how it can precipitate migraines, headaches, and even seizures.  So it's curious that right when Hurricane Sandy came whipping through with its low barometric pressure, that's when his neurons started acting up.   Interesting.

He had an EEG and a CT angiogram (to look at his vessels) as well but we don't know those results yet.  In the morning he'll get some more bloodwork to look at his thyroid function and inflammation markers.

His team thinks that this is simply a matter of some breakthrough seizures that will be controlled with a medication change.  They think the left-sided weakness is all related to that.  I like that, it's an easy problem with an easy fix!  However, they have to keep him for a few days for observation, just to cover all bases.  Of course my dad is not thrilled to be in the hospital, he wants to sleep in his own bed and not be hooked up to monitor cords and wires.  He hates missing the gym and getting to drive around in his truck.  But otherwise he's doing ok.  We'll weather this storm and get right back in the swing of things.  I'm hoping for a discharge at the end of the week.  

4/25

Dad has been released from PT!  He went back to the gym this week (I even woke up early to go with him at 5am) and he had a couple awesome workouts.  Things are going great!

4/16

This past week of having Dad back at home has been going GREAT.  I swear he's doing better now than at any point so far in his recovery.  The most recent hospitalization has been a mere bump in the road, his motivation and attitude are so fantastic.  He's home and really enjoying life - sitting on the front porch drinking coffee, catching up with filing and reading, weeding my garden, and playing with the kids.

He was prescribed outpatient PT, OT, and speech therapy.  But out of all three, he really only needs the OT because it addresses his vision impairment and left hand strength/dexterity.  He's only had two sessions so far and already showing nice improvement.  They tested his strength in both arms, hands, and feet and he's definitely still a bit weaker on the left.  But despite that he still tested above average for his age in all areas.  They're working on his left hand dexterity a lot too with complicated stuff that even I would have a hard time doing with my left hand, pretty soon he'll be ambidextrous!  And they have special vision-training machines to help strengthen his peripheral visual field, which is awesome.  His left peripheral vision has definitely been steadily improving though.  At first he had a pretty significant left visual field cut.  Now it's mostly just the extreme left side and bottom of his periphery that seems to lag behind.  We have an appointment scheduled with Dr. Bytoff next month, a neuro opthamologist to follow up more in-depth with the vision and find out when he's allowed to drive again.

He really doesn't need the PT, but I think he'll end up going a few more times.  It's nice for working on balance and equilibrium, but he's plenty strong and agile enough.  They gave him clearance to go back to the gym so it's just a matter of time until PT discharges him from their services.

He had speech therapy for the first time today and he's already been discharged from their services.  Evan, the same speech therapist from last time, said he got out his absolute hardest tests to use on my dad.  He said he was really excited about these tests because he never gets to use ones that are this challenging, they are designed to be taxing for even the most "cognitively-gifted".  A.k.a. They're supposed to be really hard even for the smartest of the smarty-pants.  And let me tell you - they were HARD.  Like, seriously really really hard.  It was like the mental olympics or something, I couldn't keep up.  Needless to say my dad did excellent and Evan said he didn't need to see him again.

So that's the latest update!

4/10

Dad is HOME!!!

He was discharged yesterday afternoon, I've never seen him so happy as when we finally got to blow that clambake.  We both practically skipped all the way to the car.

The final verdict is still that this whole thing was inflammation from an autoimmune response, but no one can seem to identify the exact trigger.  Just that this again is "extremely rare and unexpected".  No matter what the trigger though, the treatment is a course of steroids so I suppose it doesn't matter.  It would just be nice to know.  They said it could be remnant inflammation from the prior encephalitis, something in the environment, or something related to the thyroid.  So we'll just keep close watch and make sure it doesn't happen again.

As for Dad, he's really doing fantastic.  The weakness in his left arm/hand is now minor and the visual field deficit is improving.  He will be going to outpatient OT and PT and has an appointment in May with an awesome neuro-opthamologist to address the vision.

I have more details, but I'm running late for work so I'll try to get another post in soon this week.  Just wanted to pass on the news that he's HOME.

Happy Easter

We celebrated another holiday in the hospital, but took it in stride and came together as a family to enjoy the day and each other.

The kids really enjoyed opening their Easter baskets in Dad's room, despite some initial confusion when I told Zoey that the Easter Bunny was delivering their baskets to the hospital and Zoey having this horrified look on her face saying "The Easter Bunny is in the hospital?!?  Oh nooooo".  She's much better now after being reassured that the Easter Bunny is ok.  

And just because I like to brag about my awesome kids, here's a couple more Easter photos of them:

As for my Dad, he's incredibly eager to get out of the hospital and we're hoping for a discharge today.  More on all of that to come!