Mike Day 82: Marching (In Place)

May 11, 2011

Family, Health, Mike

Yesterday I arrived at the rehab expecting to see (a) the feeding tube gone (b) a wound vac on Mike’s bedsore to heal it in (optimally) 2 months and (c) an appointment made at an ENT to evaluate the condition of Mike’s vocal cords so we would know if we could pull the trach or not.  You see, IF a person has paralyzed vocal cords…and both are paralyzed…the cure (whether short or long term I couldn’t say) is a trach.  If Mike’s are paralyzed, and we pull the trach, he could go into respiratory distress and require a new trach.  And that might not happen right away.  Now why would we want to do that I ask you?  Since Mike has odd symptoms that could be related to cord paralysis it seems to me it would be a good idea to check it out prior…and then know what to do rather than hope for the best. 

When I arrived, Mike was in PT.  As I sat there in the gym and watched him go through his exercises, his nurse for the day came in.  I had noticed he still had a feeding tube.  I asked her when it was coming out.  She told me “we” decided to keep it in.  When I asked why I was informed they had done a chest x-ray to see if he had aspiration pneumonia.  (Now remember…I’ve been asking if he could have aspirated since they gave him spoons of water even before the barium swallow).  I asked what the chest x-ray and the feeding tube had to do with one another.  She responded “Well, if he does, how will we feed him if the feeding tube is gone?”  I said OH.  I didn’t think of that.  What I thought was this:  You’ve given him water by the spoon which you later came to find out that he aspirates in 1 of 4 trials during the mbs.  You’ve been giving him pills whole.  He’s been getting soft diet with the VitalStim on.  He’s also getting a pureed diet regularly.  How the heck do you know what he’s aspirated if it turns out he aspirated and why would you go back to all tube feedings when you don’t know what the culprit is???  I kept my mouth shut.  

Instead I mentioned the ENT appointment…which the care manager had just told me she would be getting involved in setting up.  The nurse told me they had decided against one since his issue seemed respiratory in nature and the ENT wouldn’t do anything about that.  I asked who WE was since I had not been included and informed her that I hate…no loathe…surprises.  She said the doctor made the decision.  Based on what I asked?  (I still don’t know).  I asked how I talk to the doctor.  She told me she wasn’t sure where he was.  I told her I would page him.  She must have seen the serious determination in my eye because she told me she’d call him.  I reminded her that when I left yesterday we had a plan.  Feeding tube out next day, ENT consult scheduled.  Wound vac on. 

And, since I didn’t see evidence of the wound vac, I thought I would venture onto that topic.  So I inquired as to when the wound vac would be going on.  I was told the decision had been changed.  A new treatment would be used.  I asked who decided that?  I was told the wound nurse.  Right after she spoke with me, examined Mike, and told me she would be using the wound vac. 

To say that I was now irritated would be an understatement.  To say that it was well hidden would be a lie.  I again reminded the nurse…in case this fact had previously escaped her attention…that I was very hands on in Mike’s care and treatment and get involved.  Very involved.  I check everything.  I want to know the big picture and the immediate scenario.  I’ll fill in the rest.  And I again reminded her…I hate surprises.  When a direction has been determined, a treatment plan put into place, I expect to see that happen, accept that there will be deviations since human life is not black and white…but also expect the courtesy of having been informed of those changes immediately…because I loathe surprises.  (Why does communication seem to be so difficult to achieve in the medical field????) I asked that the wound nurse come to see me to explain the decision. 

Meanwhile, I got to see my wonderful husband walking up and down the halls with only a therapist at his side.  No walker.  No cane.  No wheelchair.  One therapist.  He stood straight and tall.  I’ve been whining to have this happen…and it was surely too early to do it safely before…but I was thrilled that this particular therapist was brave enough to try it, try it successfully and tell me they would keep practicing it and in a couple days if it goes well for them, she’d give me permission to walk him this way.  YAY!  He went up and down steps, played air hockey with me for a minute, did calf raises and practiced side stepping in the parallel bars.  He’s not smooth and graceful as he once was, but considering he’s had only 2.5 weeks of therapy, he’s doing GREAT! 

We got back to his room and the wound nurse came in to visit.  She explained that she and the doc had decided he might fidget too much on the wound vac, ultimately making the wound worse.  Valid.  I can accept that.  So what is the new treatment?  A seaweed based dressing impregnated with something.  Becomes gel like on the wound and absorbs the drainage.  Then, a colloidal silver based dressing over that which manages any bacteria (there is no infection…just normal flora) that is causing the odor…which I know she knew I was sensitive to.  (I certainly harped on it enough…she couldn’t possibly have missed it so I’m grateful she is doing something about that).  So I was like ok…and what are we achieving with this plan in terms of healing…her goals are managing drainage and odor.  OK.  I’m good with that.  Next big question…since I often see things lagging….how long and when are we assessing the efficacy of the treatment and determining next steps.  Good question she told me.  (I thought so…) She thought for a moment and said two weeks.  So now.  Having committed to two weeks, I hope she has a plan to see it in 13 days and a new plan on the 14th ready to communicate to me because I have a tickler reminder in my calendar.  Two weeks from yesterday I will be asking for her to come talk to me again.  With data.  (I suspect these folks are not accustomed to being project managed…)

While we were talking, the doc came in.  I think he’s a nice guy…but I think he would almost rather not talk to families much.  He seems a little shy.  I’m probably pretty overwhelming.   He explained that they wanted a chest x-ray to rule out the possibility of aspiration pneumonia…and I launched on my well, what are you going to do if it is???  Go back to all tube feeds?  I’m not having any of that and you can’t tell me it’s pureed foods he’s aspirated if he has so now what?  Well, maybe another MBS to see if he’s aspirating.  Well OK.  But I AGAIN explained my rationale in why I want a ENT consult.  I described the symptoms.  I described my observations.  

Doc said they can do an ENT consult but they don’t contract with any so care management needs to get involved and find out who scopes, who can take our insurance, get an appointment, arrange transport. It might be next week. I was like…do you want me to make the appointment?  I’ll have it done this afternoon!  Transport? Throw him in my car.  I’ll transport him.  Jeez Looooise.  This ain’t rocket science!!  Get the ambulance company for crying out loud!   So I guess we’ll get an ENT consult sometime. 

My frustration with the slowness is this.  We are facing a discharge in 2-3 weeks now.  I would think there should be some concrete plan in place with goals for what needs to happen between now and discharge…and not be waiting till 2 days before discharge to make things happen.  Maybe there is one…and I’m just not privvy to it.  Which brings me to frustration 2.  Communication.  It’s rather disjointed.  The care manager is the focal for communication…and she’s great.  But the medical stuff seems not to be too detailed in that communication.  I get the sense maybe most families aren’t as concerned with the medical minutiae as I am.  Maybe in reality, it’s not the hospital’s failure to communicate…it’s that the expectations are not in line with the standard program.  I dunno.  I want to be fair because in spite of my frustrations, they are really, really wonderful.  Without exception. 

Mike was grumpy at dinner.  His short afternoon nap had been cut short for the chest x-ray.  So I let him lay down before dinner.  He was not ready to get up.  Thus, he didn’t want to eat.  He didn’t want to be out of bed.  He insisted on trying to put himself to bed.  He was ugly.  I was vile names.  I was a liar.  Yet when I said I was leaving, no point in being there, he told the nurses he wanted me to stay…he was scared I was leaving.  I felt so bad for him.  In spite of feeling bad for myself because he was so unreasonably ugly to me…while I know he can’t help it, doesn’t mean it, it hurts dammit!…he told me his head was just spinning around inside and I felt so powerless to help him to quiet his mind.  The spinning inside his head must be horrible and he must also feel powerless and angry. 

On a happy note.  Last night respiratory pulled the chest x-ray report.  No sign of pneumonia.  No mention of aspiration anywhere.  Atelectasis remains from the original pneumonia and I am told it will probably not improve until he is really up and moving very regularly and deep breathing as much as possible.  So now we need the ENT…I fear that report may not be as happy.

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