Fun Fact

Ernest Vincent Wright wrote the fifty-thousand-word novel Gadsby without any word containing "e."

There's No Place Like Home

Ian is home!

We arrived yesterday around 3pm.  Leaving the hospital was like coming home with a newborn; "They're letting me take this guy home? I'm now responsible for his care?  Yikes!"

We arranged for a hospital bed in he parlor, where he sleeps soundly as I type.  It's great to have him home.  He is relieved to be here.

It must be very odd after so long away.  And then there's his condition...

So I've said we took a step backward - I talked about the dumbs and the headaches.  I will do my best, here, to describe what's going on.

Saturday morning (I wasn't there), Ian became unable to "find is words" and had a stat MRI.  In this and subsequent scans, nothing has shown different, worse, anything.  The reasons for his symptoms now are deemed purely metabolic; all we can do is ensure he is properly rested, hydrated and medicated and wait for this to pass.

The good news is:

• he has had few if any headaches since coming home... and that's after a steady few days of searing ones.  He gets them from positional change, and I'm sure some of you migraine sufferers can relate to that.  
• he is happy to have visitors*
• his at-home therapy will start soon (perhaps today -- I'm waiting for a call)
• the kids are happy to have Daddy back

The difficult news is:

• we have no idea how long this "setback phase" will last.  There was no prediction of its onset, and so therefore no prediction for its passing.  If you've been with a stroke patient, you know what a struggle it is for HIM to communicate, and for ME to be patient, interpret, understand, take action.  Something like, "How was your day at school, Audrey" sounds like "how... is... is... how... you... how... at... the... place... where... place... how... today?"
• I am on overdrive, taking care of 2 kids and Ian.  I have to keep track of his intake of food, fluids, meds.  I have to escort him to the bathroom or empty his urinal.  I have to take care of all the regular household duties and I have a few at-home paid jobs to do in the meantime to contribute financially.

*In addition to being the mom, chauffeur, dietitian, chef, maid, nurse, I am also the wizard:  Nobody gets to see the patient, no way, no how, UNLESS it's arranged through me.  PAH-LEASE don't show up unannounced, even if it's to drop off cookies; if my front door is open, the storm door will reveal your presence to the kids, and there will be a flurry of activity that may wake Ian, cause him to be interrupted in eating something (which is also a challenge) or interrupt me in one of a series of important tasks.  Ian is happy to have visitors; it cheers him!  We welcome them!  We just need warning.  I've been gracious to visitors thus far; don't make me shake the can of you-know-what and spray y'all because I. WILL. DO. IT.  You won't like me when I'm angry.

Drat.

Foiled again.

I stayed at the hospital last night, intending to scoop him up and take him home this morning.  Unfortunately he has an off-and-on killer headache and a case of the "dumbs" -- the seizure-like symptoms of not being able to bring words to mind or articulate phrases or thoughts.  Concerning, frustrating, and enough of a disturbance to keep him here an extra day for observation.  He had an MRI, EEG, and the gamut of blood work -- all showing things to be "normal" and nothing of concern.  So now it's more observation, pain meds as needed, and some preventative headache/seizure med changes.  (for those of you familiar, Topamax is the likely candidate).

What now? home tomorrow, perhaps.  However, since he could be tomorrow the way he is today, it could be more of a cloistered day in the bed as opposed to a fresh-air day on the porch.  Well, we'll just to have to play it by ear, one day at a time, as is our custom.

The good news: trach is out, sleep is sound, he's able to lie flat.  He is back on food (with limitations and alterations).

Prayers:  That this is temporary.  Even if it's long-term temporary, that the dumbs resolve, the pain subsides, and the other therapy progresses as it has been.  That he's able to feel the prayers, that they lift his spirits when he gets frustrated (he's much more likely to become angry and depressed at not being able to say something he's thinking, or come up with the correct word, than he is that his foot won't do what he wants it to do).

Mental and psychological endurance for me; I'm entering the care-giving stage.

Patience for the kids; dad can't toss the ball or pick them up.  Probably can't read any stories.  That will be disappointing at best, distressing at worst.

Support:  I have no idea what things will look like going forward; we will have in-home therapy for a bit, then out patient. That will mean taxi service, perhaps, or child sitting while I taxi, or a little of both.  Follow-up appointment(s) with surgeon and misc. specialists.  Not sure his tolerance for the everyday goings-on of children, so they might need some playdates; the good news is we're coming up on good playing-outside weather.

Fun Fact

The name for Oz in The Wizard of Oz was thought up when the author, L. Frank Baum, looked at his filing cabinet and saw A-N and O-Z, hence Oz.

Update: April 22

Who has two holes in his head 

and comes home Tuesday soon?

THIS GUY.

A Gift For You (and me)

Dear Blog Stalker(s): Update, April 17

Hello, friend.

Have you obsessively routinely been checking for updates here?  If so, I do apologize.  These days have turned into the "daily drag" of victories, setbacks, and steady, snail-steps forward (Wait, snails don't step, do they?  Hmm.).

When we last left our hero, he was working hard, feeling better and going out on the town.

Not sure if the previous virus was just that or the beginning of pneumonia, but no matter; he has the latter now and is back on the IV antibiotic chasers. (We are not sure of the cause, but it's possibly a result of aspiration from attempts at eating and drinking.) As a result, he has been relegated to tube feeds only; a bummer after previous culinary excursions.  Also pushed back (I'm full of asides today, but it always irritates me, that phrase "pushed back" -- it seems to me that if you're looking at a calendar, the way MY mind operates (visually) that moving something to a LATER date would be pushing it FORWARD.  Am I alone here?  I digress.)  is the removal of his trach, which was tentatively scheduled for earlier last week.  No dice; they want his lungs all healthy before they go fussing with that.  Bummer.

His coughing and .... ahem... that WORD ... is MUCH less.  I stayed the night Friday and he got a ton more contiguous sleep (save the &*@#&^ IV machine's beeps and the nurse's inability to make it stop) than he has in weeks.

His balance has improved.  His right side is still tingling/numb and his right hand lacks quite a bit of strength and fine motor skill.  We are not sure how much, if any, of normal function on that side will return, but what we DO know is that it has significantly improved since before surgery.  It's possible that the brain stem sustained permanent damage from the bleeding event, and it's (just as?) possible that as blood ebbs and swelling decreases that more improvements will come.  We just don't know.

As far as his return home: WE DON'T KNOW (common theme).  At this point the plan will be to have him come home, as opposed to a closer, in-patient rehab facility.  But seeing as he still has a trach and feeding tube, and now pneumonia ... the timing of all things is uncertain.  We just do the day-at-a-time deal.

Prayers: healing from the lung cruds.  Continued (encouraging) steps forward.  Trach removal at the earliest possible time, and stronger swallowing function.  If he can get the trach out, chances are the swallowing (and even chances for combating pneumonia?) will improve.  Then the feeding tube can go ... It's kind of an "if-then cycle".

I will endeavor to keep you posted on a more regular basis this week.  In the meantime, prayers on warming up the weather and calming the winds wouldn't be a bad thing, either!

Fun Fact

In an episode of The Simpsons, Sideshow Bob's criminal number is 24601, the same as the criminal number of Jean Valjean in Les Miserables.

Things I Have Learned

Lessons learned lately (not a comprehensive list):

• The Pittsburgh motto: "You can't get there from here" is not limited to the city itself, but includes the hospitals within.  No, you cannot get to the 7th floor of Mercy Hospital this week.  Except you can, except you have to take the green elevator to the 1st or 5th floors and go to the purple elevators, do the hokey pokey and say, "hocus pocus" three times.
  

• Someone has it WAY worse than you.  And he's right down the hall.
• This is what it's like to be a single, working mom.
• In grief: joy.  From the mud: a daffodil.
• Doctors breeze in and out, but nurses are the infantry.
• Many people who know Ian well didn't know his first name is really James.
• (some) Hospital food is not that bad.  Good, in fact.
• We produce, on average, a cup of SECRETIONS* a day, but we swallow them so we don't notice. (Ian doesn't have this luxury. Yet.)
• Sign your will before you can't write ;)
• This is how it looks when a community rallies.  These are the hands and feet of the Body.  This is how my peeps ROLL.   I can't wait to return the favor(s).
• It costs $4/day to watch teevee at the hospital.  I guess they have to pay for the incredible amount of single-use vacuum sealed plastic apparatus they go through in a day ...
• The "INFORMATION" sign at the information desk really DOES need some quotation marks.  Or the irony font (which has yet to be invented).  

And now, your moment of zen:

jailbreak! with proper permission, of course :)

*I haaaaaaaaaaaate this word.

Fun Fact

In the 1983 film Jaws 3D, the shark blows up.  Some of the shark guts were stuffed E.T. dolls being sold at the time.

It's a Beautiful Day

And nearly as beautiful in here.

If yesterday's events were caused by a virus, today the virus recedes.  Slowly.  No fever to speak of, still weak and tired but not wiped out like yesterday.  On the whole, much less snot coming out.  Today's menu included jello and an ensure.  Progress!

A showered Ian is now resting up for physical therapy at 3.

In case you missed yesterday - the MRI is "clear" and showed nothing to be concerned about.  Yes, he still has tingling in his left side, but his foot is better than it was.  It's possible his hand is, too, slightly, but he can't really tell.  His walking today was NOT off balance, but I would say he was lacking in some control of the right side, and looked dizzy/weak as opposed to numb with no center of gravity.  Translation: walk=good.  Sick=bad.  Tomorrow=less sick + more walk + some food.  Progress.

Prayers: sleep.  Poor bugger gets very little contiguous shuteye.  I spent the night last night and I would say he MIGHT have gone an hour without coughing... and when I say coughing, it's not the kind you fall back asleep immediately after.  It's snot-spewing choke-like hacking.  Phooey.

If it's a virus, that it's packed its bags.  We need another setback in rehab like, well, a(nother) hole in the head.

What I Wouldn't Give For a Mesa Plateau

Instead, we get this ^  ... up and down and sometimes UPSIDEdown.

On Monday, Ian got to try pudding and jello and gingerale!  He topped it all off with a chunk of chocolae cake and a glass of milk at the end of a long day of therapy.  You should have seen his eyes when he realized the cake they had (cruelly) baked in the therapy room and the slice she was bringing over with a fork was for HIM.  It was a glorious day.  He was strong, in good spirits, doing therapy without his oxygen supplement. His voice was strong and his "secretions" (if I never that word after we get out of here it will be TOO SOON) were lessened.

Yesterday ... we (his family support staff) took the day off: illness, tasks, etc ... I talked to him on the PHONE to check in.  Wow.  He sounded tired but good.

Today I got here just in time to see him right after his swallowing test (barium swallow with xray picture to see where the stuff goes), which he did not "pass."  So no good foods for him for a bit.  His coughs were thick and different and he had a fever.  And then he threw up his feeding.  Told me that he had tingling on his LEFT side as of the morning.  If you have followed since the beginning here, you'll know that his RIGHT side is mostly numb and tingling, and that we headed to the hospital when the left thumb started to tingle and he couldn't swallow.  So ... any move on the "more things tingling front" leads to immediate concern.

Luckily the doctors here are wonderful and hooked us right up with a scan and then an MRI.  Thankfully, those showed no new bleed and if anything, show a decrease in blood product or swelling from the operation itself.  SO... we don't have any cause for the tingling now except that it's possible some errant blood went carousing and caused the tingles.  In the meantime, it seems to me that he has a virus, but that would be a layman's opinion.  Who knows.

What I DO know is that he has gone at least 30 minutes without coughing, he no longer has the chills with fever, and he's sleeping comfortably.  His color isn't back to normal but it's not green.

What does all of this mean?  Just that every day is different.  We can rejoice in the victories and try not to be defeated in the setbacks.  We have hope, and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us. (Romans 5:5)

Prayer: for health and relief from the cough and fever.  Continued strength.  I'm staying the night- rest for me and that my back doesn't get any worse because of it (it's angry at the moment).  For a fresh, new day tomorrow.  Encouragement and stamina.

Thanks, y'all.

Ok ,Ok, update time!

My apologies to all our loyal fans; I haven't updated in a bit.

This is today:

We're gonna call it "resting comfortably."  He's gone nearly 2 hours now without coughing ONCE.  His body is resting, his throat and lungs and whatnot are cooperating.  Yay!

Today was a therapy day (he has 6/7 days therapy; Sat was his day off this week).  He did some swallowing attempts - I would call his success rate about 50% there (watching someone learn how to swallow is EXCRUCIATING, at least for me).  He lets an ice chip melt in his mouth, then allows it to gradually go into his throat and trigger the swallowing mechanism.  He has to concentrate on breathing through his nose while doing so, and that whole "not going down the wrong pipe" thing.  But in the midst of that therapy, he got a shout-out from the peeps, which made his DAY.

Next was occupational therapy where he put things together using pvc pipe and joints to mimic shapes on a printout.  Then he played solitaire (no, really - coordination, grasping, etc.  It's therapy!).  Then it was off to PT where they had him doing laps (no, really; three walks around the wing, two without an oxygen hookup).  

This was a short day; usually he will do that much, then have a break, then hit it again till around 3, but today he was done at 11. Tomorrow, apparently, will be grueling.

I have to say this over and over, but thank you SO much to ... all of you.  Just reading this means you care, which means so much.  The generosity and kindness of everyone of our friends, family, community and church body has been overwhelming.  We are SO blessed.

Today will be the first time the kids will see Ian in rehab ... the last time they saw him he doesn't really remember seeing them, so I am looking forward to this reunion.  Other than that ... not much to report.  Each day the same and different.  Forward motion (no steps back since the trach incident).  

This was him the other day: 

goofy smile but a smile nonetheless:

FYI Renz and Tucker: he's in the pack and play here:

This is where they put you if you're a bad boy and try to get to the potty on your own at night.
He asked nicely and now he's allowed to sleep in a big-boy bed.

Please, if you want to know something, ask away.  I have time, when at the hospital at least, to answer emails and (sometimes) update the blog.

Fun Fact

The first time the "f-word" was spoken in a movie was by Marianne Faithfull in the 1968 film I'll Never Forget Whatshisname.   In Brian De Palma's 1984 movie Scarface, the word is spoken 206 times -- an average of every 29 seconds.