the scoop

"We are what we repeatedly do. Excellence, then, is not an act, but a habit." ~Aristotle

Monday, May 9, 2011

HI THERE!

It's 6 am, Monday morning, and as I write this post, Ian is at the local coffee shop, in a Bible study with several of his church/town guys.  God is good!

I apologize again for being remiss in writing.  If I thought the days of back-and-forth hospital trips were busy, they had nothing on our transition home -- especially those first few days.

It's difficult to be a nursemaid.  It's mentally challenging to give your 33-year-old husband a shower.  But we persevered.  After a few days we settled into a routine and things have gotten busier and easier all around.

Our first outing after homecoming was Opening Day at the baseball field.

that's Audrey, the giant, waving her glove ...

Mrs. Happy and Mr. Grumpypants, who refused to participate in the day.





































Between introducing all the teams and throwing out the first pitch, military veterans were honored.  We wheeled out onto the field and Ian was able to stand for the National Anthem.


The day left him quite exhausted.  He came home and slept.  But it was a good day in the fresh air.

The next few days contained initial visits from the home health nurse, physical therapist, occupational therapist, and speech therapist, as well as friends and family.  I scurried about preparing his various medications and meals he could manage to consume.  I injected his meds and water by his stomach feeding tube with a syringe, since swallowing was still a bit of an issue.

Headaches and lethargy abounded.  His eyes still jiggle and swirl, making reading impossible and television a not-so-passive activity.  But slowly, we have made some progress:

  • He is able to tolerate more "awake time."
  • That horrid, hospital cough is gone.  The only coughing we do follows a misplaced mouthful of food.
  • Showers require a trip up our giant, old staircase ... we've navigated it quite well several times.  
  • Thin liquids, while still a potential hazard, are not impossible.
  • He is eating like a champ; yesterday we met my folks at Cricksters for (just Ian) coleslaw, chili, a pulled pork sandwich (without the bun), fries and a milkshake.  (I had a salad).  ---->
  • I think we're done with the feeding tube, so that can come out soon, meaning ZERO wires.  Whew.
  • The headaches have lessened in intensity and frequency --  If you saw the dance his eyes do constantly, you'd wonder why he doesn't have a CONSTANT headache!
  • While we still have a hospital bed in the parlor, I would call it nearly unnecessary at this point; he sleeps horizontally, and is able to rise from a prone position.  The benefit of having it is that when he is completely exhausted from therapy, he has a closer locale to recoup than our bed at the top of the aforementioned stairs.
The miscellany:  We have a therapist here nearly every day.  Ian gets stronger with every session.  His word-finding abilities have, to my ears, completely returned.  His right hand still doesn't cooperate, so typing, driving, etc ... are not in the very near future.  That's not to say they aren't out there -- just not as close as, say, sleeping in our bed and eating a steak (not at the same time! gah!).

He sounds funny; his tongue is wonky and his voice is different ... sometimes his lips don't form the words crisply.  He doesn't stumble when he walks, but he still needs assistance (no matter what he tells you!). He is able, however, to brush his teeth, use the facilities, take his pills, pull himself along the floor in his wheelchair with his feet.  

Ok, so Monday isn't the weekend, when I promised to have an update written.  And I feel like this post is not adequately describing his situation and progress.  So bear with me, ask questions, and I will try to flesh out the Maize Family Picture as best I can.  

Until the next entry - God bless you all for your time, money, efforts, prayers, concern, loyalty.  It means the world to us (Ian's just beginning to learn of the kindnesses done for us these past few months, and he's overwhelmed).   I am simultaneously humbled by and proud of the generosity of our supporters.

Saturday, May 7, 2011

Fun Fact

Tommy James got the inspiration to write his number-one hit "Mony Mony" while he was in a New York hotel looking at the Mutual of New York building's neon sign flashing repeatedly: M-O-N-Y.

Saturday, April 30, 2011

Fun Fact

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

Friday, April 29, 2011

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.


Tuesday, April 26, 2011

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.

Saturday, April 23, 2011

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.

Friday, April 22, 2011

Update: April 22

Who has two holes in his head 
and comes home Tuesday soon?
THIS GUY.