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!

4/5

Apologies for the delay in updating, I realize many of you have likely been checking in here to find out the latest.  It has been a hectic week.

Well, we've had a bit of a setback.

I took Dad in to the ER on Sunday 4/1 for stroke symptoms.  He had onset of significant left arm and left hand weakness, slight left-sided mouth droop, and significant left peripheral vision loss.

He was seen immediately in the ER where I work and was quickly evaluated by the Neurology service.  Initially he was admitted for stroke and the whole stroke work-up was ordered.  He remains in the Neurology IMC (Intermediate Care Unit) at Hershey Medical Center.

I'll spare a lot of the details over the past week, but after some tests it no longer appears that he had a stroke (which is good news).   His MRI shows that he has superficial tissue damage to the back right part of his brain.  That tissue is "angry" but not dead.  This is not consistent with strokes, which show deeper brain involvement and usually an actual death of brain tissue.

So then the question arises, what is it?

Initially his neurologist, Dr. Reichwein, had 3 possibilities:  1) inflammation 2) infection 3) seizure.  To narrow this down, he had a lot of tests ordered, most notably EEG (to look for seizure activity) and a lumbar puncture (LP) to check his CSF (cerebrospinal fluid) for signs of infection or inflammation.

We're still waiting for the EEG to be done, but he had the LP and the results are consistent with inflammation.  The CSF was also sent out to test for recurrence of the viral infection that caused his encephalitis back in December, but those results won't be back for a couple of days.

Right now he is being treated with IV steroids for inflammation and also IV Acyclovir pre-emptively just in case the CSF comes back positive for infection.   Dr. Reichwein is fairly certain that there is no infectious process or recurrence of his encephalitis, but we'd rather treat with the Acyclovir as a precaution.

So then the question is, how did he get this brain inflammation?

It is related to his encephalitis, but Dr. Reichwein said it's highly unusual for this to occur.  His current thinking is that when my dad originally got sick in December he had the infection (which was treated) and the inflammation (which was expected to resolve after the infection did).  The infection went away but the inflammation didn't.  Further, (and this is the part which is highly unusual), he thinks that the inflammation may have migrated from the site of his infection (middle of the brain) to the back of the brain.   The treatment for this is IV steroids.

Currently he has improved (even before we started the steroids).  His left arm is just as strong as his right arm now, although he has still has issues with left hand finger dexterity.  The mouth droop is basically gone.  He still has a significant left-peripheral vision deficit, but it has gotten slightly better in the lower part of his visual field.

The plan is to keep him in the hospital until at least Monday to get the IV steroids, monitor him, possibly repeat the MRI, and do the EEG.  He may also go home on oral steroids, depending on his progression.

What I find interesting is that the site of his current inflammation (and his pain) is the back right of his head - the same place he's had pain all along.  Dr. Reichwein agreed that he may have had this inflammation brewing for awhile.

So, that's the current update.  He's bummed to be in the hospital, but dealing with it well.  Mostly just annoyed to be hooked up to so many cords and wires.  We're disappointed that he has to spend another holiday all cooped up.  We celebrated Christmas in the hospital, now Easter too.  But we plan to have an egg hunt for the kids in his room and we'll open their Easter baskets there Sunday morning.  Should be interesting if we don't find all the eggs, the next patient in that room will get a nice surprise!

Happy 65th Birthday!

Today my dad is 65 years old, we have much to celebrate and be thankful for.

He's doing so incredibly well.   The neck pain is now minimal, he does still have pain on occasion but it's rare and manageable.  His Neurontin (nerve pain medicine) is now tapered down to 600mg three times a day, we will continue to decrease the dosage weekly until he is no longer taking it.  He continues to take 1000mg Keppra (seizure precaution) twice a day but I'm hoping we can decrease that after his Neurology follow-up visit in two weeks.

He's sleeping better and is now able to sleep the entire night in his bed.  He goes to the gym several times a week.  Enjoys driving his truck, going for walks, sitting on the porch in the rocking chair, and doing the New York Times crossword puzzle.  And of course spending time with the kids.  He takes Zoey to preschool every Tuesday and Thursday, just like he used to do before.

We celebrated his birthday as a family on Saturday.  Zoey had a great time baking his cake.  She made the whole thing mostly by herself, with a little help from Finn and Marty.

That evening we went out to eat at Gilligan's with the family to celebrate:

This morning he came over to take Zoey to school and I made his favorite - homemade biscuits, recipe passed down from my family down South.  This batch came out really awesome too, some of the best I've made.  I think he had a really great day.

3/3

Oh boy it's been awhile since my last update!

Things have been going great the past couple of weeks!  Dad continues to do fantastically well and these days I can barely even tell he was ever sick, much less intubated in the ICU with his future brain function completely up in the air.  His recovery has been nothing short of miraculous.

The neck pain is very minimal and doesn't cause a problem for him.  He's sleeping a bit better at night (until now he's been up every couple of hours, moving between the couch, bed, and recliner to find a good sleeping position).  He's in the process of getting into a routine again and loves that he's gotten back his independence, is driving his truck, and overall doing things for himself again.  He went back to the Historical Society this week, where he used to volunteer once per week before getting ill.  I believe he'll start going back there on Thursdays to help out.  And we're finally at a point where we're decreasing his Neurontin dosage in the interest of tapering it off.   He was taking Neurontin for the excruciating nerve/neck pain and was up to the max dose of 1200mg three times per day.  Now he's down to 900mg in the morning and afternoon, and 1200mg at night.  We'll continue to taper it down slowly each week.  So far he's doing just fine with the decreased dose and I think he's looking forward to when he can stop taking it altogether.  He's still taking Keppra (for seizure prevention), but I think we should be able to decrease that dose when he has his next neurology appointment in April.

Anyway, just wanted to update that all is well!

2/16

Ever since we left the ER almost two weeks ago, Dad has improved by leaps and bounds.  He's doing phenomenal.  The neck pain is more manageable.  His cognition is great.  He's basically back to his old self again.  The only thing he really has to cope with at all is intermittent short term memory difficulty.  But it's really small inconsequential stuff like "Did I already call to make a haircut appointment or do I need to do that still?" or "Where did I put the keys to my camping trailer?".  Heck, I have those difficulties on a daily basis without a brain injury!  Half the time I find myself standing in the middle of the grocery store with no clue what I came there for.  Like I mentioned long ago, I think the only thing this encephalitis did is knock Mr. Perfect Memory down a peg to be down here with us common folk.  :)

As if my singing his praises isn't enough, he had two awesome follow-up appointments this week, with Neurology and Infectious Disease.  There were a lot of words and phrases thrown around by the doctors, such as "outstanding", "unbelievable", "one of the fastest recoveries on record", "most recovered case we've ever seen".  The Infectious Disease doctor today said that in the past 5 years he's seen 13 cases of the type of encephalitis my dad has.  Of those 13, he said my dad is the only one who has basically come back to baseline.  Most of the rest have marked neurological defects.  And even the ones doing fairly well, it took them over 6 months to get there.  We're only 2 1/2 months out.  We know there will always be good days and bad days along the way in this healing process, but it's great to know that his recovery is taking a truly amazing road.

His doctors have given him full reign to do everything he used to do, no limitations.  We're excited that he can really get back to living life again.  However, I said that I forbid him from leaving town (and being out of my immediate sight) until he's at least 6 months out.  I know, overprotective perhaps.  But I told him I'm not taking any chances, he can consider himself grounded until May!

Throughout his illness, I've read a million studies and articles on prognosis.  The statistics that most stick out in my mind is that encephalitis, even treated with Acyclovir, is fatal 20% of the time.  57% of people have serious long-term neurological damage.  20% of people recover with minor to moderate damage.  Only 2.5% regain normal brain function.  My dad is that 2.5%.  We are blessed.  

2/12

It has been a great past couple of days!

Dad's neck pain has been totally manageable.  I don't know if it's a result of the increased dose of Neurontin or just the course of the healing process, but either way we'll take it.  With this improvement in pain he's seemed like his old self again.

On Sunday we went out for lunch to celebrate his graduation from PT/speech therapy and his overall progress:

2/9

Dad graduated from speech therapy yesterday!

Evan (his speech therapist) gave him the same test that he had on two previous occasions:  on first admission to Osteo and then when he first started outpatient therapy.  The test looks at areas such as memory, comprehension, problem solving, executive higher level functioning, attention to detail, spatial relations.   My dad doesn't remember taking the test the first two times, so it's still a good measure to see how he scored this time and especially useful to compare this test to the first two.  It's an unbiased and quantifiable way to clearly demonstrate how he has improved.

The first time he took the test (on admission to inpatient rehab), the result was moderate deficit in memory, attention to detail, and problem solving.

The second time he took the test (on starting outpatient speech therapy), the result was minimal to moderate deficit in memory and minimal deficit in attention to detail.

This time he took the test, there were NO deficits.  He scored completely normally.  Woohoo!

Of course, he still battles some memory problems at home, but nothing compared to how it was.  And it's fantastic that he can complete any cognitive challenge without difficulty.  Definitely cause for celebration.

2/6

Well, we went to the ER yesterday.

The neck rigidity and pain were markedly worse yesterday, so it was definitely prudent to get the MRI ASAP to ensure that these symptoms didn't indicate anything new going on with his disease process.  Thankfully that doesn't appear to be the case.

We spent 11 hours in the ER to get that information, it was often agonizing and excruciating for Dad, but well worth it in the end.  Don't get me wrong, we got excellent care by my co-workers, it was just a very long day.  It started ok, but the MRI experience pretty much blew all of that to smithereens.  I completely underestimated how hard it would be for him to have the MRI.  I think if he were to get on here and share his thoughts on the MRI, this blog would no longer be PG-friendly!  There probably aren't enough 4-letter words and expletives to describe his feelings about the MRI.  But don't worry, if you talk to him in person about it, I have no doubt he won't hesitate to tell you!

I'm sort of an idiot for not considering how awful it would be.  You take someone healing from a brain injury with debilitatingly excruciating neck pain, put a cage on their head (literally), force them to lay locked-up on a rigid board in an enclosed tube, blare shrieking noises from the tube incessantly at them, then tell them not to move even one inch for 45-60 minutes.  Yeah it's an understatement to say that he didn't like it.  He actually did ok for the first 20 minutes, then a wave of intense neck pain hit and the inability to move in there was awful.  They let him out, I came down and convinced him that he could endure the rest of the test.  I stayed in the MRI room and held his hand for the rest of the scan, giving words of encouragement, and promises of bribery.  We absolutely needed those test results, but I definitely owe him several rounds of homemade biscuits for that torture.

The MRI showed no new area of bleeding or injury, which is great.  It basically looks mostly unchanged from 6 weeks ago and that is normal.  I've learned from Cathy, Neurologist Extraordinaire (who I was texting frantically from the ER all night, I definitely owe her biscuits too), that the MRI isn't really expected to improve until at least 3-6 months out.  It's hard to say what caused his huge spike in pain and stiffness, other than people with encephalitis are extremely sensitive to overdoing it.  They can decompensate quickly in the pain department from pushing themselves too much, even sleeping in a bad position.  But not doing enough leads to pain and stiffness too so it's a sticky wicket.

Today was a much better day.  The pain/stiffness were bad this morning but lessened as the day went on.  He was active in the morning, rode the exercise bike in the basement and took a long walk.  He and Meme went out to eat for lunch then came over to our house for the afternoon and for dinner.  He and I sat on the back porch, drinking coffee, and watching the kids play in the giant dirt pile in the back yard.  It was the nicest weather we've had in awhile, so it was very much welcome.  It was the kind of day where you can sit outside in a sweatshirt and appreciate the chill in the air but still feel totally comfortable.  Definitely a much better day.

2/04

The Good:

Dad officially graduated from PT!  His physical therapist tested him on a variety of different physical exercises and he passed with flying colors.  His balance, endurance, coordination, and strength have all markedly improved.  So now he'll continue his physical exercises independently at Gold's Gym.  He still has a ways to go before he's able to do the same type of workouts he did before becoming ill, but I think whenever his neck pain finally resolves that he'll be able to do much more.

His last Speech Therapy session may be this week as well.  Evan (his speech therapist) said that he's actually been having a hard time coming up with enough challenging material lately.  Although we did have a disagreement with Evan about one of the projects he gave my Dad that he gave him lower marks on.  We both had to school Evan on how Italians have parties.  The assignment was to plan a fictional pizza party for 12 people using a menu that Evan provided.  He had to also account for two vegetarians and two children as well, pick enough items from the menu to feed everyone, then calculate the total (with tax and tip) correctly without a calculator.  So my dad picked out a total of 12 pizzas, 12 salads, a bunch of desserts, and drinks.  He added all of the numbers perfectly and aced it in my opinion.  However Evan was critical of the fact that he ordered too much food and marked him down a bit, saying "well you would never order that much food for just 12 people, you could have just ordered enough pizzas for everyone to have 2 slices and that would be sufficient".  My dad and I both promptly told Evan he's crazy.  I said "Listen, we're Italian, that's how we roll".  And proceeded to explain that when you come to a party with Italians, you always have too much food, it's just what we do.  You have to have enough to feed everyone, have enough to snack on later, AND have enough to send home with people for leftovers.

The other good thing in this update is that Dad finally got to drive his truck again.  He did great!  We drove around Middletown, out to TMI and up and down 441 and he had no problems whatsoever.  So from now on I'll have him do the driving whenever I pick him up.  We'll do that for a few weeks and then by the end of the month I anticipate he'll have his truck back.  I know he'll be relieved to have that independence.


The Not-As-Good:

For the past few days my dad's neck pain and stiffness have been much worse than they have been for the past couple weeks.  It's been downright excruciating for him at night and he has hardly been able to sleep at all.  It's been keeping him up and he's so tired from it.  In addition, he had one rough episode of "visual flashes" the other night too.  Basically when the brain is healing from encephalitis, it can sometimes fire random electric signals, which can manifest in a variety of ways, in his case seeing a succession of random images flashing before him.  It's very common during the first year and usually just happens at night.  But it can be extremely disconcerting and a bit scary while you wait for it to pass, especially if you don't know it's normal. Thankfully he's only had this a couple of times over the past two months, some people get it constantly and much worse. I'm glad that's not something he's had to deal with much.

However, the increased pain lately combined with that intense episode has me watchful. His mentation and cognition are fantastic and I feel like he's doing great, but I also feel like we can't be too cautious.  I am overly protective and alert for any tiny remote possibility of a return or increase of his original illness, so we're going to schedule a repeat MRI this week.  He was due to have one anyway at his neurology follow-up in April.  I spoke to his neurologist today and she agreed it was prudent to do it now just to make sure the increased pain isn't a sign of anything else and to check how the healing process is coming along.  In addition, we're going to increase his bedtime dose of Neurontin and try some Tylenol PM to see if it will allow him to sleep better at night. With any luck he'll be able to sleep through some of the pain. It's amazing how many aspects of life that pain can affect. I swear if we could just get rid of this darn neck pain, that would fix just about all of his problems!

1/30

This may be Dad's last week of PT!  He's been going to the gym and doing so well with his physicality that we don't think he really needs the PT anymore.  So his physical therapist is putting together a big "test" for Thursday for him, which will determine if that will be his last session.  Woohoo!

In other news, he got a fancy brand spankin' new computer.  His old one was a dinosaur and had been trying to go extinct for some time, so Marty drove him to the Apple store in Lancaster.  They looked at a couple and decided to get the newest Macbook Pro.  I told him the computer is not only his reward for good behavior this month, but also for contending with the crowded Park City Mall on a Saturday night!

1/25

This was a good week.

The neck pain is still very much present, but has been downgraded to mostly a dull aching throb instead of a constant sharp stabbing pain.  He's often able to get in a position where he has very little pain for awhile.  He's doing awesome in speech therapy, the therapist is giving him more complex logic puzzles.  They're hard!  I swear it takes me just as long to work them out.  He also has a yellow homework folder with a variety of different cognitive exercises to do at home each night.  When we first came home from rehab, I had to pester, torment, and bribe him to do any of this stuff at home.  Now he does it totally of his own accord, and even does the daily crossword on top of that.  He has done something physical every day, if he didn't have PT then he went to the gym.  Tomorrow I'm taking him to Gold's again.  This time I'm going to motivate myself to actually work out instead of lazily trailing him around with a cup of coffee.  February 2nd is his last scheduled PT appointment.  Initially we thought he might need to extend it another couple of weeks, but now I'm doubtful we'll need to.  I think after February 2nd he'll just transition to doing everything at Gold's.  He still has to work hard on the balance exercises in PT, but even he admitted that he would have had a hard time with them even before his illness.

He's gone to pick up Zoey from preschool with me twice this week too, which was great.  Zoey gets all excited when she sees him through the window.  

He's very anxious to start driving his truck again.  We're going to ease into it, at the end of next week I'm going to take him to a big parking lot and let him drive around.  We'll do that for about a week.  When that goes well, I'll start letting him drive on back roads to go places, always with me in the passenger seat.  We'll progress to more and more driving around the area until he's completely ready to have his truck back.  I think he'll be back to driving on his own by the end of February.  Honestly, he probably would do just fine earlier but I'd like to just be on the cautious side and take it slow.  

Sometimes I can momentarily forget how serious and life-threatening his illness was.  He's recovering so much faster and so much better than anyone thought, it's easy to lose sight of.  Especially when he's excelling so well physically and doing so great with his cognitive exercises.  But the biggest reason he's gotten so far so fast is through his dogged determination and constant struggle to improve.  It's cliche, but my dad is a serious fighter.  This recovery hasn't come easy, he's had to earn it.

He continues to battle difficulties with short-term memory, like recalling what he had for breakfast or keeping track of his exact schedule for the week.  He makes it a point to ask enough times until it's cemented though.  Sometimes he might mix up details or dates.  He still can get a bit sensory-overwhelmed in crowded or noisy places or just when his mind has been working on overdrive, but that's getting less.  Things often come up that he can't quite think of or find the answer to but he fixates on them determinedly until he figures it out.  Like remembering which way he used to drive home from the gym or what one of the bridges is called in Harrisburg.  So many things flit in and out of our minds so easily.  He has to work really hard to think of some things that we just take for granted.  But it's that hard work and determination that are pushing him to improve leaps and bounds ahead of when we thought he would.  

1/20

Quick update to celebrate a couple new milestones from this week:

- My dad went with me to pick Zoey up from preschool.  This is something he did all the time before getting sick, he was her primary transportation to school.  So this was a nice step in returning to his old routine.  I know he really enjoyed it and you should have seen Zoey - when she saw Pop Pop in the hall she went tearing out of the classroom into his arms.

- We went to Gold's gym today to restart his workout routine.  Ok, so we didn't actually get to work out since it was closed, apparently last night some drunk drove into a telephone pole and knocked out power to the block.  But I figure he gets credit for showing up.

- Today he also went to lunch and spent the afternoon with Gary Hall, which was his first non-immediate family/non-therapy related outing.  He said he had a great time and it did him a lot of good.

- I think the increased dose of Neurontin is finally starting to help with his neck pain.  He's now able to occasionally get into positions where he is temporarily pain-free.  This would have impossible just a week ago.

Little by little making progress and restoring more normalcy back into life!

1/16

Oh wow I am so bad, I can't believe I'm almost a week behind in posting an update!  Many apologies!

There aren't an abundance of giant changes, the past week has been more of a slow and steady climb.  He had his follow-up appointment with Infectious Disease (they are another team involved in managing his viral encephalitis).  Like everyone else, they were completely impressed with how well he's doing.  The attending physician said that he was "staggered" and that my dad looks the way he would expect him to look at 3-4 months out, not just 6 weeks out.  His mental status has really been rebounding quite nicely.

Of course the big drawback continues to be the neck pain though.  It's constant and awful and affects everything he does.  The Neurontin has helped a tiny bit, but it really seems minimal.  We'll give it some more time and then explore some other options while his brain is healing.  It's hard to say how long the neck pain will last, it may be another couple weeks, it may be another couple months.  That is an eternity when you have constant pain.

He's doing excellent with his outpatient PT and speech therapy.   Definitely getting stronger and sharper every day.  He told me today that he is anxious to get back to Gold's Gym, which is yet another encouraging sign of recovery.  I can tell he really wants to get his life and daily routine back.  So tomorrow I'm going to take him to Gold's Gym in the morning for a re-introduction to that aspect.  However, I should say that it will not be quite like his previous daily routine.  Did you know that my dad used to go to Gold's five days a week from 4:00am - 7:00am?  Yeah, this girl is NOT getting up that early.  I'm thinking more like 10:00.

His other short term goals have been to organize his belongings (which until now have been in clear tupperware containers from when we moved them back from Louisiana) and start attending Sunday breakfast at Aunt Evelyn's house.  His major long term goal is to drive his truck again.  He really misses that.  He's not quite ready just yet and he'll need to pass some tests by Occupational Therapy in order to drive again, but it's a great goal to aspire to and hopefully won't be too far off.  It's the real symbol of him getting his life back.

1/10

Ok, my dad is kicking some serious butt in this recovery process.  Ever since Zoey's birthday party I've noticed he's much more back to HIMSELF, I love it!!!  He's brighter and sharper, smiling, sense of humor is back, he's awake a lot more.  His mental status is greatly improved, he's still a bit slower than normal and quick to get mentally tired-out and overstimulated, but he's much closer now to his pre-illness baseline.  It's fabulous.

Of course the overall barrier though continues to be the intense neck pain.  It's difficult to treat too since it's not muscular and it's not skeletal.  It's nerve-related pain due to the irritated lining of his brain.  Think shingles pain.  Only think of a shingles-like pain that shoots straight into your brainstem.  It's constant and intense and affects everything.  The pain affects his ability to concentrate, to read, to do simple tasks like shower or get dressed, to sleep.  It's temporary, but it takes a long time to go away due to the slow healing process of the brain.  But once he gets that pain under control, he's going to have a huge surge in returning to his normal functioning.

He had a neurology follow-up appointment yesterday and they were positively THRILLED with his progress.  Everyone says that he's recovering and improving so much faster than anyone expected.  I thought it would take him a good three months to get where he is today.  My dad always has been an overachiever.  We also got a prescription for a new medication, Neurontin, to try to cope with his neck pain.  I'm really hoping it will make a difference.  The only drawback is that it can tend to make people a little drowsy, we've finally gotten him to wake up so I'm hoping that's not too much of an issue with him.  But even if it is, it's worth it to get him through some of this pain for the present time.

He had a really good PT session today.  He actually said during the session that he was glad to be there and had been looking forward to it for the past day!  He was smiling and joking with the therapist and did much better with his balance and endurance.  Big improvement from just a week ago.

1/8

Today was great cause for celebration, it was Zoey's 3rd birthday and her Pop Pop was able to come over to our house for a small birthday gathering.  AND he wore real clothes for the first time!  Until now he's been in sweatpants and comfy t-shirts, but today even though I know he was very tired he actually broke out the khakis and a button-down shirt. Woohoo!!

1/6 9:30pm

Thank you to everyone that has been sending cards to my dad, he got three in the mail today.  I could tell they lifted his spirits so I got out the large manilla envelope full of every card he's received since getting ill.  I didn't anticipate he'd want to look at all of them all tonight, but I just wanted to show him the big stack so he could see how much love and support he's been getting.  I was wrong, he did want to look at them.

We sat at the table and he read each and every one.  If you're reading this, Jeanie Harig, Ray Miletti, and Greg Gorman, he got a particular kick out of yours.  But of course he appreciated them all.

Thank you all for the continued well wishes and support.

1/6

Good PT session today, Dad had a lot of really engaged participation.  Mostly they worked on balance exercises.  His large muscle groups seem to be strengthening nicely, but he still has trouble with fine motor control and coordination.   The therapist praised all his weight lifting and leg exercises, but then set up an obstacle course for him to walk through and after he inadvertently sent the cones flying she compared him to "a bull in a china shop".  I tried to explain to her that he's always had those tendencies, ha!

After PT he actually suggested that we go shopping so that he could buy Zoey's birthday present.  Until now I had been putting off taking him out because I didn't know if he was quite up to that challenge.  A "simple" trip like that is incredibly taxing on the healing brain - all of the lights, sounds, people, walking/physical effort, and just visual overload from all the stuff on the shelves.   And Dad is definitely not the world's biggest shopping enthusiast so I had been debating when to give that a whirl, but this was a great opportunity.  We went to AC Moore and lasted about 5-10 minutes before turning around and leaving.  I told him that is a huge accomplishment, seeing as how he probably wouldn't have lasted 10 minutes in there before his brain infection.  Have you been in that place?  It's like an explosion of kitschy crafty mayhem that smells like a geriatric potpourri dish.  I personally love it and could spend hours in there indulging all of my creativities, but wow talk about overstimulating the brain.

Yesterday was much more relaxing, I picked him up and brought him over to our place for a couple of hours.  We sat in rocking chairs by the fire, watched the kids play, I drank coffee while Marty and my dad sipped on glasses of whiskey.  Dad informed me "this is the best medicine I've had yet".

1/4: One Month

I just looked at the clock and realized that at this very minute one month ago, I received a phone call from the Hampton Inn hotel employee Barbara that began with "I think there's something wrong with Mr. Urich".  Those minutes are frozen in time and I recall with complete clarity the helplessness of being hundreds of miles away and the agonizing uncertainty if that night was when my dad would be taken from me, from all of us.

So much has changed in a month.

In one month he has gone from ICU in Baton Rouge, flown on a medical jet, ICU and then floor at Hershey Medical Center, inpatient at Osteopathic Rehab, and now home in his own room.

He spent over 1/4 of this past month intubated on a ventilator.  During this past month he had to relearn simple things like how to walk again, how to use a fork and eat independently, how to do his own bathing.  The first week off the ventilator he was fairly confused, unable to recall dates and places, unable to correctly identify many people he's known his whole life.  Now he easily knows who everyone is, does simple crossword puzzles at the dining room table, and is recalling all kinds of things that I never knew.  He is still fuzzy with memory, he has a hard time keeping the timeline of the last month straight and remembering which hospitals he was at.  His short-term memory is still dodgy overall.  I tease him that this gives him an excuse for life:  "It's not that I'm getting old and can't remember things, I blame the brain infection!".  I figure he can keep that ace up his sleeve indefinitely.

His cognition is very much there, he just has difficulty focusing for long periods, coping with distractions, and paying sharp attention to detail.  These things will definitely improve.  We practice doing simple math at home, balancing checkbooks, puzzles, doing brain games.  We did a game today that my friend Katie recommended, where I name a month and he names the holidays that fall during that month.  I named February and he not only named Valentine's Day and Groundhog Day, but Washington's birthday & Lincoln's birthday (of which he knew the exact dates).  I am a terrible citizen, I didn't even know their birthdays were in February.  My brain-injured dad is teaching me all kinds of things.

After one month the biggest barriers continue to be his severe neck pain and extreme fatigue, both associated with his brain infection/injury.  His neck hurts so much and he's so tired that he tends to find a comfortable spot in bed and wants to just stay there.  So he needs continued encouragement to get out of bed for more than just meals/shower.   He's beginning to get aches, pains, and muscle stiffness from being in the bed for so long.  We are trying to get him in the habit of stretching and doing small range of motion exercises every time he gets out of bed.  I also threw out all his ice packs.  He kept wanting to put ice on EVERYTHING, his neck, shins, ankles, joints.  The cold was locking him up and making things worse, so I told him when he has aches and pains he has to get out of bed and stretch for awhile then he could have 20 minutes of a heating pad.  Although I'm glad to report his appetite is definitely back.  He lost about 35 pounds in the hospital, he looked so peaky last week.  But now after some home cooking he's eating well and looks healthier.

Thinking back to what he looked like when I first walked in his room in the ICU in Louisiana to where he is now, I'm ecstatic.  He still has a long road of healing ahead of him, it will take a lot more time and patience.  But he's made enormous progress.

Happy New Year!

We are so ready to leave 2011 behind, bring on the bright shiny future of 2012!

My dad's first weekend home went well.  As expected, the familiar environment has been very good for his recovery.  Although he still sleeps a LOT, he has come out of his room on his own to sit in the recliner, read the paper a little bit, eat, shower.  Today he laid on the floor to play with Uncle Scott's dog, Max.  His appetite has finally returned and after losing over 30 pounds in the hospital over the past month, we're hoping to fatten him up.  The fatigue and the constant neck pain (from the continued brain irritation/swelling) are difficult to cope with though and he spends much of the day in bed.  However, at least he has a little company when doing so, Zoey loves to be at her Pop Pop's side: