Mike Day 10 of The Journey Forward

June 6, 2011

Family, Health, Mike

So here we are, ten days from Mike’s discharge.  It’s been a ride, but we are finally settling into some sort of normalcy…or something akin to a routine, which is very comforting to me these days.  Oddly enough, I used to view spontaneity as the greatest gift and found routines to be tedious.  I think I’ve had enough spontaneous stuff this year to last a lifetime.  Lately I find myself content to embrace tedium…

All in all we’re doing well.  I came home with about 16 prescriptions, wound care supplies for a couple weeks, a big, huggable husband who generally didn’t know my name, and at least a bushel full of trepidation.  Who in the world was I to have thought I had what it takes to manage this day to day? 

Well, the good news is that while the first two or three nights were somewhat hideous, it’s been pretty smooth sailing since.   Nights one and two there was no rest for the weary.  The weary being me.  Not Mike.  He was not weary.  Maybe it was no rest for the wicked.  Whatever.  There was no sleeping.  In spite of having given Mike the prescribed Ambien, there was no sleeping.   In retrospect, I probably should have taken them myself!  Since there was no “tent” around the bed as he had in the hospital, he was free to explore.  And explore he did!  Night one I  found him on hands and knees, en route to the loo, he had tripped over the dog bed. Day two I dozed on the couch as he watched tv…the dozing was unintentional…and Kristin showered.  I awoke to her voice announcing “Dad’s missing.”  We found him in the side yard.  To get there he had gone down the cellar stairs, out the back door and into the yard.  Why, we asked him? The dogs told him “they had to go o-u-t.”  That night he was particularly confused and aggressive toward me so I gave him an Ativan…sent with me for my safety at the suggestion of nursing.  It soothed him, but the resulting confusion was not pleasant to see.  (It will be a cold day when I resort to that again!)  The next night I awoke to find him missing again.  Mikey and I hunted him down, terrified…found him stretched out on the couch playing with the dog, wondering why it was he couldn’t be there.  That he had traversed steep stairs and the kitchen and living room in the dark and the fact that he was unsteady on stairs seemed not an issue to him.  I stopped giving the Ambien.  He began to sleep the night, getting up only to visit the loo.  The family doc gave me Lunesta for him…but I’d like to go it without sleep aids.  I don’t think he needs any CNS depressants.  We’re doing OK without.

I also eliminated the Senokot, Colace, suppository daily ritual.  I preferred Metamucil for a couple days, prunes in the granola, apricots in the granola, fruit smoothies, fruit juices and veggies/salads.  After 3 or so days (when hospital nurses would have been fussing about the lack of wastes…) we achieved success.  Daily, continence, both bowel and urine.  That’s not to say it’s perfect.  In a strange place, like therapy, where the bathroom is geographically unknown, there are accidents.  The trigger from urge to void is a hair trigger.   When there is evening confusion, there are accidents.  And, though he was up and down to the loo the first couple nights, the last several I’ve had to change sheets once or twice a night.  Gotta figure out what’s going on there!  Meanwhile, his aim is abysmal.  The bathroom has never been scrubbed this often.

The cardiologist eliminated one BP med and decreased the dose on another.  I take his vital signs twice daily (and chart them)  to ensure he can get the one BP med and I must say, his BP has improved since coming home.  Bottom line, we were down to 9 or 10 prescriptions until the wound care center got the culture back on his bed sore and it showed a few MRSA bacteria.  So now he’s on Doxycyclene for 10 days. 

As a side note, I think the bedsore is looking smaller, and as bedsores go, it looks pretty darned good.   I need to clean, pack and dress it daily (or more often as needed)…and it doesn’t appear infected, so I hope the Doxy wipes out those few bacteria and we can get this thing closed up fast!  The wound nurse said right now they would call it Stage III…it had been Stage 4 just before he left so I’m hopeful.  They tell me good nutrition, high protein is important so I am protein loading his meals with body builder protein shakes and protein doctored smoothies for snacks. I recently read that per calorie, there is more protein in broccoli than a burger…and of course, no fat.  Guess what Mike’s going to be getting for dinner a lot?  The cardiologist has no current dietary restrictions other than to avoid sodium.  Says he’s malnourished and wants him to get plenty of nourishment to build muscle.  His weight was a hefty 305 when he got sick…now is about 235 but he lost a lot of muscle! 

Bottom line, we are busy.  God bless Melanie, Mike’s sister.  She picks him up for therapy, spends the day with him, has him for lunch.  She loves to spend time with him…recognizing how near she was to losing him I am sure…but also to give me a break.  A much needed break.  She is my hero.  I am eternally grateful for those breaks!  I am also thrilled he can spend time with her this way.  For long enough while they worked they didn’t see one another very much.  Last week, after therapy, he walked into her house and asked “how are the girls?”  They called them.  Unfortunately by the time he came home he neither recalled calling them or visiting Mel.  Short term memory has been dramatically impacted through this.  Still, there’s doctor appointments, wound care appointments, showers, meals, meds…all of which fly by in the normal scheme of a day but take exponentially longer now due to the injury.  Then there’s the wound care…which I have gotten quicker at.  And the laundry…which I have not and truly hate but what are you gonna do?  And the cognitive “teaching” stuff.  Well, the days are full.

I’m reminded of the conversation I had in my senior year of high school with my dad.  We were discussing college.  Well.  We were fighting about college.  I wanted to be a lawyer.  In all of my 16.5 year old wisdom, I was certain I would live a glamorous life, rich, famous, living in a swanky NYC Brownstone, practicing law.   He informed me young ladies were teachers or nurses to better support their husbands with the family.  I pointed out I detested snotty nosed kids and had NO plan to be the handmaiden to some doctor passing bedpans/urinals, cleaning backsides, and changing beds.  My solution?  Marriage.  Now, said my dad, you will need to work.  Silly girl, I thought a baby would stop that work nonsense.  Enter snotty nosed kid to the equation.  A stint working in the local laundry that did the various commercial accounts bedding in order to demonstrate income for a mortgage.  Divorce.  Remarriage.  More kids.  A decent career in spite of myself having nothing to do with kids, laundry or nursing.  (See Daddy?) And now, full circle, teaching, nursing, changing beds, doing laundry.  I am reminded of Dr Seuss…Oh The Places You’ll Go ….   

Since he’s home Mike knows me, the kids, the neighbors consistently.  He knows and recognizes most people from the past  pretty consistently.  He may or may not recall his sister Micky who died 30 years ago.  Depends on his state when you ask.  He may or may not realize his dad and mom are dead…depends when you ask.  He helps fold wash, empty the dishwasher, gets his own coffee, takes himself to the bathroom, washes, dresses, showers himself.  Goes to therapy three times a week, does physical exercises the other days at home and cognitive exercises every day.  He walks half to three quarters of a mile the days he has no therapy.  He looks tenderly and lovingly at me and tells me “thank you for all you do for me.”   He used to be brusque, almost harsh…though he loved them…with Kristin, Cameron, Justin.  Justin is a bit undone by the changes in Pap so is not too frequently in his company.  He’s so young still and thought when he came home he would be same old pap.  Cameron helps out continuously.  Kristin is ever present with pap.  He looks at them lovingly and with joy…he cups Kristin’s face and tells her he loves her.  His face lights up when she smiles at him.  He pats Cameron’s chest telling him he’s a good man and thanking him.  Tells him he loves him every time he sees him.  Cameron beams.  The difference in his self confidence…and I think in Kristin’s… is huge.  He constantly looks for his son, Mikey helps with him a huge amount.  And if I hear Lara Elizabeth Smallen’s name once a day I hear it five times.  He loves his kids and has a new kind of relationship with them.  And they are benefitting from it as is he.  There’s been healing all the way around. 

I’m reminded of Dr. Soraya Jimenez, the neruologist who charted “Probability of meaningful recovery is unlikely” and asked me if I had heard of the term vegetative.  I wonder what would be meaningful if it were her husband or family member?  I am feeling like we have had a pretty meaningful recovery so far…and expect more to come.  I realize that this recovery is not the norm  At the visit with the family doc, Dr. Spatz commented, “Boy.  He’s really beaten all the odds.  Never, in my entire career and years of practice, have I ever seen anything like this.”  I am reminded of something Melanie said…that there’s a higher power involved here.  Yep.  I have asked God for healing repeatedly and so many others have asked and I know that it’s His will that Mike has survived and improved.  There is some plan, some purpose that is not yet evident to me…but I know that we can trust our lives to God who will use the docs, the scientists, to carry out His plan as He sees fit.  So I know Soraya meant well…she just didn’t realize who she was contending with….and so forward we go, each day an adventure.

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2 Comments on “Mike Day 10 of The Journey Forward”

  1. Beckie Says:

    I have been reading for a month, now. I have prayed for you and Mike. It was such a relief to see a new post today. So good to hear that Mike is doing so well (considering). Tears poured down my face when I read about the kids helping. One of my daughters has a poor relationship with her dad, dear hubby. I hope that it doesn’t take an illness or accident to wake her up to the love that a daughter & dad can have with just a little effort. I hope that the coming days are gradually better for Mike and in turn for you. It’s amazing what we can do when we are thrown into the fire!
    Beckie in Brentwood, TN


    • rsmallen Says:

      Thanks so much Beckie…your thoughts and prayers mean everything. I’ll pray, too, for your daughters relationship with dad. I had a troubled relationship with my own dad. I’m living proof of the regret that results from waiting too long to wake up.


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