Mike Day 36 Moving Forward: Midsummer Night’s Dream

July 2, 2011

Family, Health, Mike

It’s been one of those periods of those days.  Days…and mostly nights…where I can’t quite explain what the heck I’m seeing and experiencing.  They’re like bad dreams.  Unexplainable.  Surreal.   Not that there has been anything big going on, or bad, it’s just a strange period. 

Mike’s been making progress cognitively.  Some days he has such tremendous insight into his current status, what has happened to him and has been very analytical about it.  There’s a true higher level thinking and depth to his processing of the information.  He seems to recall the heart attack for days…and then the next morning is shocked to hear he had a heart attack.  Not that we discuss it 24×7, but he’s trying to make sense out of exactly what happened to him and when he forgets the heart attack can’t understand what’s wrong and I’ll say well, remember, we spoke of this, the heart attack blah blah blah.  And though he may have brought it up the night before on that particular morning it’s a huge surprise to him.  SIGH.  If I could have a do over on my life I would definitely go into some kind of research into the human brain.  I really need to understand what makes this clarity and confusion co-exist in such close timeframes.  What is the trigger?  What is the solution?  Nobody seems to, the brain is truly a mystery.   

He’s keen on helping me however he can.  He tells me I shouldn’t have to work so hard.  Thus, I’m incorporating things around the house for him to do.  I’m putting the Swiffer duster in his hand, dishwasher chores, bed making chores, and I always have him putting his things away.  If I don’t give him these things to do, on days when there is no therapy he will sleep incessantly.  However, when he sleeps incessantly during the day, he also has the best nights.  Less confusion, more sleeping, less wandering.  Days when he is busy and active he must be overstimulated because the nights are really a mess.  Wandering, balling up the sheets and blankets to take them outside for an unknown reason, digging around in drawers and closets, taking his clothing out in piles so he can “pack it up to go home.”  When I ask where home is he says Eisenhower Drive in Northampton, Pennsylvania.  When I explain that is where we are he asserts I’m full of it.  When I show him the street number and street sign (at 2 am in our nightclothes…which means his boxers and mercifully we live in a small development on a quiet street where the sidewalks are rolled up at 9 pm) he still asserts I am wrong.  It seems we go through spells.  Spells where he’s doing fine during the day, fine at night and sleeping all night.  Then there’s a swing and he’s fine during the day, confused and restless at night and sleep does not come to him (or me) till 4 am.  We are in the latter spell now.

He’s also looking everywhere for his stuff.  Now Mike used to have stuff all over.  I am not a stuff collector.  I had been harping for months that he needed to clean his stuff up or I would…and he knew that meant a large garbage bag was in order.  While in the hospital, it was necessary for me to clean his stuff but frankly I didn’t have the heart to throw it away.  I threw away the garbage…the papers that were months old etc…but his stuff is intact, just put away.  Seems he recalls it being out in the open…but it’s not a clear memory.  He’ll come to where some of it was, under his fly tying desk and look for it.  Not seeing it.  Seeing other stuff instead.  The fly tying desk has been moved and there are no stacks of stuff under it.  He looked for his tools.  I told him they were in the shed.  he informed me we don’t have a shed.  Uhhhh.  Yeah we do.  It’s begging for me to come and clean out and organize unnecessary stuff.  HE informed me he was “totally disconnected from everything,” and when I questioned what everything was he said “all my stuff”.  Not that this is important stuff, but it must have been to him.  I’ll have to try to get the energy up and about to try to find the stuff that might occupy him and not be strewn about everywhere or be harmful. 

We have had a small health scare.  Mike’s had a cough, a tight cough, since the hospital.  It was one of the reasons they cited for not taking out the trach.  I didn’t view the cough, in the absence of other clinical issues, to be sufficient justification for living with a trach.  I also don’t view it as the permanent or ultimate solution for his sleep apnea.  I can’t keep his hands of the healing stoma…how I’d have kept him from pulling the trach itself out every hour is beyond me.  But that’s history.  The trach is long gone.  Only the cough remains.  Suddenly, a few days ago, he began to complain of chest pain.  Of course, my first thoughts are cardiac.  The signs and symptoms of cardiac involvement weren’t there and having seen his lovely patent coronary arteries save the left main only a few months ago, my brain eliminated cardiac problems and I chose to wait till the next day rather than race to the ER. 

Of course, the appointment I made with the family doc at 6:55 pm, came to the docs attention the next morning at 8 am, an hour before the scheduled appointment.  Naturally, seeing his complaint of chest pain they wanted to send me straight to the ER.  I persuaded the nurse it was not coronary pain.  Instead, I worried a new, aspiration pneumonia was starting  since he’s been having a bit of trouble swallowing pills lately.  No, there’s no fever, but I’ve eliminated everything else.  This complaint of transient pain is pulmonary not coronary.  So off we went to the doc for an exam and EKG.  And out for chest x-rays and lab work.  All was well. I asked if he might benefit from a bronchodilator since the breathing treatments in the hospital had helped him tremendously and the atelectasis in his right lung remains.  The Doc ordered an inhaler and a recheck on Friday with the regular family doc in the practice he sees.  Friday’s recheck came around and Mike had actually benefitted from the inhaler when we could manage to get him to inhale it into his lungs.  Given his poor motor planning abilities and my total lack of them the inhaler was an adventure.  I whimpered to the family doc that I lacked the coordination to make sure we could use this properly and his injury had left him devoid of the ability I never had.  He pointed out that the inhaler was for wheezing…and he has no wheezing…so he’s making a med change.  To Advair.  So simple even a child can do it.  Well not these children.  At least not at the night dosage when confusion reigns.  But we’re working on it.  Sadly, I learned I need to add COPD to Mike’s long list of diagnoses.  A result of the scarring from pneumonia, the ventilator, the trach, he has yet another serious health souvenir.  Will they never end? 

On a better note, the visit to the Wound Care Center was definitely positive.  Dr. Bazel, a general surgeon examined Mike’s bedsore to see if the undermined area needed to be surgically opened from the top to allow it to heal inside out…since the mouth of the wound is healing rapidly.  The undermined area is as well, just not as quickly.  He decided it did not need to be opened at this time and he’ll see us again in two weeks…continue to treat as we have been.  YAY!  The ulcer is definitely smaller.   As is the size of the undermined area.  And while I was there I asked him to look at the healing trach stoma.  It weeps.  And it has a small extra flap of skin like an outty belly button.  The doc told me it will keep growing, create irritation, weep, bleed and with my permission and if Mike would allow it, he would simply sniff it off right then.  I was like “Go for it!”  So now we have the trach stoma rehealing without the flap.  But not without the picking and scratching.  I simply can’t keep Mike’s fingers off it.  SIGH.

Hopefully this weekend we’ll get to visit my Aunt, Uncle and cousin Wanda who’s home visiting from Okinawa.  Even more hopefully…Monday’s the 4th and Wanda might come down for it.  That would be great fun.  Today is out of the question.  Nocturnal confusion and wandering last night has ensured Mike is still sleeping at almost noon.  This too shall pass again…but I’m certainly hoping it will be soon.  Meanwhile, I’ve prepared my Christmas gift sewing list and outlined the quilts I need to begin to work on.  I can’t measure the same thing twice to save my life…and Mike was always a meticulous measurer.  I’m planning to turn him into a quilter this week, helping me to measure and cut out quilts.  He’s game.  And it’s good stimulation for his brain.  Unlike mine…which it just frustrates. 

Happy 4th everybody!!

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One Comment on “Mike Day 36 Moving Forward: Midsummer Night’s Dream”

  1. Beckie Says:

    You must certainly be gathering strength from God, because I think that I would have “cried uncle” from your most recent post. Mike is so fortunate to have you fighting for him daily. Thoughts and prayers!


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