Mike: Day 60; The Highmark saga continues

April 19, 2011

Family, Health, Mike

Yesterday was a busy day for me.  It’s exactly 60 days since Mike’s MI and the medical shit storm that has rained down on our house ever since.  It seems, in the 60 days, the demands that this has created have increased rather than lessened and my life, my time is no longer mine or my families.  It is dedicated to ensuring that i’s are dotted, t’s are crossed, fighting and scrambling to ensure the right thing is done for my husband and that his medical needs are met.  Advocacy is a full time plus job.  Mercifully I have been a curious, stubborn PITA since I was a little girl.  Advocacy for me comes easily.  It’s probably tough on the medical professionals who, though they admire my advocacy, would rather see me sedated and sitting in a corner twiddling my thumbs I am sure.  Can you spell micro-manage?  Control freak?  I think they would probably say it is spelled R-O-B-I-N.   

I visited Rep Julie Harhart’s office where Wendy, her legislative assistant, got to work for us.  She got the Insurance Commission on the phone and, since the State is self insured, found out they have no jurisdiction.  Next, she called the legislative contact number at Highmark.  Initially they were not sure they had received my letter of appeal.  They did find it and assured them it would be reviewed.  Wendy (the assistant) asked what I was supposed to do with Mike in the meantime?  As he’s languishing in bed waiting, she pointed out, he is approved by for skilled nursing facilities (nursing homes) only…and since he is in restraints with a standing restraint order, and she is told that nursing homes legally are not licensed to take patients with restraints, what precisely am I expected to do with him?  Highmark’s representative had no real reply other than that she was not a medical professional but that I would have an answer by the end of the day.   About 3:00 Wendy called me to tell me that she had both good and bad news….the BAD, that I wouldn’t have an answer Monday.  The GOOD, I would have one Tuesday and Highmark was having an independent review board look at the case and my appeal.  They had been given a deadline of 9 am Tuesday.  (As I write this at 8:04 on Tuesday morning…counting down the minutes, I want to tell you….it’s been a looooong 24 hours!) 

Is it good that there is an independent reviewer?  I am leery.  I don’t know if this is SOP or because I’ve created such a ruckus.  Or because my letter was pretty pointed.  Highmark does NOT have Good Shepherd’s latest information.  Their appeal was separate from mine, and is only a standard 30 day appeal.  It had not even gone to Highmark yesterday at the close of business.  Thus, the independent reviewers are operating with old clinical data…much of what is refuted as a result of Mike’s progress since this whole appeal mess started.  I refuted it in my letter of appeal…but my experience has been if the medical professionals haven’t said it, it didn’t happen.  Now Good Shepherd tells me that in their book and InterQual’s Mike was qualified and appropriate placement in a brain injury rehab BEFORE this progress was made.  Clearly Highmark didn’t think so.  Hopefully this independent reviewer will.  Though I worry…I don’t know who this independent review board is or their qualifications.  For all I know it’s the brother in law of somebody at Highmark.  Time will tell I suppose.  Meanwhile, we must begin the task of bringing in these nursing homes to evaluate Mike…even though I expect they are going to systematically reject him on the grounds of restraints and trach. 

I’ve asked what happens if they all reject him but he is not approved for rehab?  I’m told that then the speciality hospital…where he is NOT getting as much rehab as is necessary…will argue to keep him there.  My next question, as a business person first and foremost, was this:  “Is your negotiated rate and the rehab’s different?”  She told me yes.  I then asked if the rehab was substantially higher and how much.  Her response?  The specialty hospital’s rate was higher than the rehab but she would get me exact figures on Tuesday.  Imagine the craziness in THAT???  They might pay more to keep him in the hospital than to send him to rehab and pay less and get more bang for the buck.  Astonishing! Well…watch for updates.  I’ll post when I know something.

Mike seems to be becoming depressed as he languishes in this bed unable to get out and move forward.  For some strange reason as of this weekend he has stopped using his voice when his trach is capped.  He is sad.  I keep saying he is “off”.  I know he is worried about me..I try not to cry in front of him when I have to talk to him about Highmark and their decision…and he wants me to explain it to him…but the reality is so heartbreaking for me that I can’t help but cry.  It bothers him that I am upset.  It bothers him that they are so ridiculous in this stance.  It bothers him that he is not able to get out of bed and build the strength in his length.  I’ve prayed and prayed…I hope that I’ll see the light soon on this. 

Last night Mike managed to get himself on his side.  TOTALLY on his side in bed.  He may have been doing it before for therapy…I’m not sure.  But he did it for his own comfort to nap yesterday.  Used his hands and arms…pulled himself over on his side.  His hips and legs were not willing to follow.  It irritated him.  He worked at it about 3 0r 4 more minutes and soon got them in line.  He was totally on his side and he slept comfortably.  For a bit.

He woke up from what I think was a nightmare.  Confused and frightened, I was unable to soothe him.  I called the nurse and in came a few.  They asked if he had pain and he indicated in his chest.  They did an EKG.  Perfect.  The doc ordered a precautionary MI profile.  Enzymes perfect.  I think one of two things has occured…either his memories of the Feb 18 event are returning in his dreams…or he had a bad dream about something else.  I asked if he had a dream and he said no.  I can’t say what caused this but within a few minutes of awakening he was perfectly fine.  It was very disturbing to me.  I want somebody to teleport us to a different dream than the one we are having is not a happy place.  But I guess that which doesn’t kill us makes us stronger.  I keep telling myself that.

I learned Mike’s kidneys are dry…so they changed one med and are giving him fluids.  Seems it is difficult to keep his body systems in balance with the meds, the tube feeds, the protein, the fluids and the fact that his body is not self regulating.  The feeding tube has GOT to go!  He desperately needs aggressive and prompt therapy to those throat muscles so he can get swallowing down again!

That said…the PEG (feeding) tube he removed last week was replaced with a foley.  So today they are replacing the foley with a PEG tube again.  He’s on his way down now for a short procedure to replace it. 

His blood clots were ultrasounded again.  There is no real change.  Still can’t get heparin…but at least there are no new ones.  

Well, off to the hospital to my honey.  Time will tell what today will bring.  I’ll keep you posted…!

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