Mike Day 84: He’s Fine. My Last Nerve Is Shot.

May 13, 2011

Family, Health, Mike

It looks like there is not much more time left with Mike spent in exile in one form of hospital or another.  The last week of May is right around the corner…worst case scenario, first week of June…and Mike should be coming home.  This, of course, depends on whether or not the medical people are giving me straight answers or not.  To date, I find that straight answers from the medical team are few, far between, and hard to come by.  Nobody…and I mean nobody…is on the same page.  The nurses tell me one thing.  The doc agrees to another.  Having garnered agreement, the docs nurse practitioner second guesses it.  Respiratory then weighs in otherwise.  The doc punts to respiratory to make a decision…respiratory says it is up to the doc.  Who the heck is responsible?  As it appears to me…only I am and that is once I get Mike home.  Then all weighs on me to deal with what they refuse to deal with now.   Did you ever feel like you only had one last nerve and somebody was doing the macarena on it?  Well I feel like the macarena is being danced where my last nerve used to be.    

We still have a feeding tube in place.  The doc said long ago it should come out this week.  Yesterday he whined about a few more days…what if he stops eating.  Well.  He might.  But when he gets hungry he’ll eat.  The problem is not hunger.  He’s hungry.  The problem is pureed foods.  Can you imagine looking at….and putting into your mouth…a pureed turkey salad sandwich (bread and all)? Or perhaps yesterday’s fare would be more appealing.  Kielbasa and pork gravy pureed together  and plopped on a plate looking like something that one of my dogs evacuated in the yard after eating garbage and disturbing their tummies!  HELLO PEOPLE!  I want to ask the doc if he thinks Mike got to be 300 lbs by being a really picky eater that he needs to worry about his intake.  SIGH.  So the feeding tube remains…one more thing for Mike to pull at if it comes to his mind because he doesn’t want it there. 

The trach remains.  This morning we are meeting with Jeff Marsh…the critical care pulmonologist who saw him most frequently at the hospital.  He is to refer to an ENT if he thinks it is necessary…I suspect he will refer at my request…and to evaluate Mike for decannulization.  (That’s trach removal in normal English).  

Good Shepherd worries that he won’t sleep with his CPAP on if the trach comes out…and are viewing the trach as the cure for his sleep apnea.  I maintain that since he is accustomed to the CPAP and was compliant in using it since 1986 it is familiar to him and he will accustom himself to having it on his face while sleeping a lot quicker than he will accustom himself to the trach, which he tries to pull out all the time and he is not accustomed to.   If he takes the CPAP off, I put it back on.  No harm, no foul. If he pulls the trach it will necessitate a trip to the ER, by car? by ambulance?, and a toll of $50 to replace it because he won’t be admitted. 

They worry that he might not be able to clear his “secretions”.  Well, his cough is strong enough he has coughed the cap off the thing and across the room.  Several times.  His lungs are clear.  No pneumonia.  The “secretions”, they tell me, are probably being caused in part by the trach.  If so, wouldn’t taking the trach out get rid of the secretions, therefore, the problem?  Heck.  Maybe they are from post nasal drip.  Maybe instead of a trach they should look at allergies!

I worry he has a vocal cord problem…thus the request for an ENT consult. 

If I try to redirect him or hold his hands to stop him from pulling it out the trach in the hospital now, he fights me.  He’s getting stronger.  He is going to hurt my hands and wrists.  He won’t be able to help it.  My strength is getting to be no match.  I won’t be able to stop him.  He won’t allow me to put mitts on him…he hates them and they make him frantic.  Furthermore, he gets them off in minutes.  They do no good.  I won’t be able to leave him out of my sight long enough to go to the bathroom if he comes home with these tubes for fear he’ll pull out the trach or feeding tube!   And how will I prevent it if he is intent on doing it?  A most sanctimonious Respiratory Therapists yesterday said if I fear my ability to manage him and my safety put him in a nursing home.  Well, she said skilled nursing facility.  We know that is NOT happening!

We’ve been ring around the rosy on this whole subject for two weeks now and get nowhere.  I am frustrated and angry beyond belief.  Underlying this whole issue is the fact that he has a ticking time bomb in his chest that shortens his shelf life anyway.  Nobody can tell me that he can withstand heart/lung bypass or that they’ll undertake it.  Or how long he has.  They can’t quantify how bad it would be to be without the CPAP.  He’s without the CPAP every day while he naps.  The concerned medical professionals are not ensuring he sleeps with it on during the day.  With them it’s all or nothing…they refuse to believe he would only have it off for short periods of time during the night before I realized it, woke up and put it back on him.  Yet they are ok with him having it off during a nap “because it is only a short period of time”.  There is no proof that taking the trach out will have a deleterious effect.  But they win.  Every time.  It’s like the blue wall of silence put up by the police force when protecting their own. 

I want to scream.  

Soothing the need to scream is the fact that yesterday, four times, for 300 ft each time, Mike walked independently with the therapist only holding on to the waistband of his sweats.  Then he went up and down the stairs from the 4th to the 5th floor with minimal assistance.  Bless Muretta for being brave enough to try!!

On the down side…and not surprisingly, though Mike was asleep when I left at 9, he awoke at 2.  He wanted the mitts off.  He is,  according to his nurse, “pretty wild in there” and had been since 2.  He wants the mitts off, and got them off several times, but when he gets them off dismantles the trach collar and they fear, will pull out the trach.  They’ve been in there “pretty much since 2”.  I wonder what the hospital will say when I tell them I am leaving at 9 every night from now on instead of staying till 1 am to ensure he is asleep and it is their problem to keep him safe and managed? 

Really.  I want to scream anyway.

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