Mike Day 80: Planning and Waiting

May 9, 2011

Family, Health, Mike

Last Tuesday or Wednesday Mike’s care manager told me they are still looking at 3-4 weeks of inpatient therapy for him.  Some quick mental math tells me that this illness will have had him hospitalized for somewhere around 100 days.  The three weeks seems so close…and still so far away.  The reality of bringing Mike home is beginning to set in. 

Today I intend to get to the hospital early.  I want to talk to the Doc.  I guess I should be more truthful.  I want to reason with and plead with the doc.  Really, I want to strongarm him if I must.  Cajole him.  I want the trach and the feeding tube out.  I want them out now.  I think he is being cautious…and cautious is good.  To a point.  I do the risk/benefit analysis of Mike keeping both those, and I don’t personally see the benefits of keeping them outweighing the risks of ridding him of them.  I expect it will be a frustrating discussion.

The trach could go…he is not dependent on it for airway.  Recently he has had thick secretions that don’t want to come up…which could be a cold, or it could be a result of the trach.  It’s a Catch 22.   

At this juncture, the only reason for the trach is to keep him from obstructing at night due to sleep apnea if he is not compliant with keeping his cpap machine/mask on.  If he won’t because he is confused or ornery or whatever, he will lose some oxygen every night due to apnic periods.  His tongue drops back when throat muscles relax and he doesn’t breathe for a certain (higher) number of seconds.  Like 30.  It wakes him slightly, his muscles go back to normal, he falls back to sleep.  It repeats.  All night long.  So the mask/machine keeps pressure blowing down his throat to keep his airway open.  The trach is below the area of obstruction so he always has air.  Without the machine.  However, he has the trach…which normally aggravates him and he tries to pull it out.  When it’s clogged up it really irritates him and he tries to pull it out.  Pulling it out and putting it in is not a huge deal…though when home it would require a trip to the ER…though it can introduce infection and scar tissue. 

Since he is prone to pulling it out, when not immediately supervised, or when agitated and supervised, he must wear mittens.  Big padded thumbless mittens that are like boxing gloves.  They make him frantic.  They put him in orbit. He becomes combative.  A different person.  And, ultimately, they stay on for 5 mittens or less since he uses his teeth to get himself out of them. 

I ask myself routinely what we are gaining.  When the mitts are on there is no sleep.  Not for Mike, not for me.  We fight.  He hurts my hands and wrists when I try to prevent him from pulling or try to put the mitts back on.     I maintain that he MIGHT lose some oxygen…but I suspect he’ll sleep.  I suspect he’ll tolerate the mask more and more…and it won’t be a fight to get it back on him.  Bottom line…there’s a time bomb ticking in his chest anyway in the form of that stented left main artery.  Nobody has been able to tell me if they are going to be willing to do bypass surgery on him or if he can withstand it.  The neuro risks to that heart/lung bypass machine for him are great.  WHY are we fighting with him over this trach????  I say let it go away, let the mitts go away, let him sleep…let him get used to the machine just as they expect him to get used to the trach.  Let’s see how I do!

In the same vein, the feeding tube is one more thing to pull out.  He’s eating pureed food…swallowing pills whole…I think it can go.  I think the doc will be amenable to this one.  Once both tubes go, the mitts can go and we are left only with the tented bed until his balance when walking is stronger.  I think I’ll also feel like we are 3 weeks closer to bringing him home.  These medical apparatuses are definitely making me wonder how the heck I can bring him home so soon…and have them???!!!  Nurses tell me he won’t go home with them anyway.  Well then.  What’s 3 weeks?  Let them take them out now.  Can you tell?  I’m preparing to do battle…

We have had mostly good days.  Some bad nights.  Mike continues to make progress and build his endurance.  I think I want to talk to the care manager about getting a really rigid schedule in place for Mike.  It will help him to have more good nights…it will help him to prepare for home…and it will help me.  I’m thinking if he is up, in chair, a couple therapy sessions before lunch, a NAP from 12:30-1:30 or 2, then finish his therapies, dinner and later bed it will be very natural.  He needs the rest.  But now, they ASK him if he wants to go back to bed.  Truly, his mental state is not one that you can rely on whether he wants to or not.  He WILL want to at 2:30.  He will NEED to.  And then he is like an over tired child and the evenings and nights are pretty hideous.  Plus I end up there so many hours a day (and night) it precludes all other activiites…including sleep all too often.  The schedule would allow me to go in later in the afternoon, visit till bedtime and come home, knowing he will be able to sleep and knowing he is not sitting in a wheelchair bored to tears for long hours at a time.  I think it’s a good thing.  I am sure the care manager will agree.  Getting it consistently implemented will be another.  But I must try….

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