Mike Day 61 Highs and Lows

April 20, 2011

Family, Health, Mike

Yesterday was a day of mixed blessings. As with almost every day I start by thanking God for another day above ground. I figure every one of those is a great day. I thank him for my many blessings, ask him to continue to heal Mike and to keep me healthy so I can take care of him. I ask him to provide wisdom to the Highmark decision makers but though the jury is still out on this one, I’ve come to suspect they are a Godless bunch, bereft of compassion, hard nuts to crack. We’ll see if they do the right thing or not. Like my sister in law I try to remember it’s Lent and I should definitely be more charitably minded about them. Hopefully I’ll do better today but suspect that it’s a test I will not be likely to pass.

To say that Mike’s illness has been stressful on all of us would be a gross understatement.  The stress of the whole Highmark debacle has put my own health at risk.  I’m feeling pretty crappy lately and have made an appointment with my own doc for tomorrow morning.  I think it’s time for a whole blood workup…including CRP and homeocystine levels and an ekg. I expect he’ll be flabbergasted when I request these things.  I am usually the one refusing tests and procedures.  Have I mentioned I HATE the doctor’s office and the whole doctor schtick?  Having seen what Mike’s gone through and knowing I don’t have the courage he has…I better get myself healthy and stay that way.  I am a whining wuss when it comes right down to it about me being sick.   I had a deficit of $2k remaining on my income taxes.  Having had to stop work to take care of all this insurance stuff and qualify alternatives in the event that Highmark stands their (ridiculous) ground, I was very worried.  I filed the extension, paid a large portion of the debt…but the remaining $2k was a plague on my mind.  I hate debt.  More than doctor’s visits.  A miracle occurred.  My IRS debt has been taken care of.  Money, unexpected money, came to me from the blue.  My tax stressor is gone.  I am reminded that we are provided with what we need.  I need to remember to have faith in this…     

Speech Therapy tried Mike on some chocolate pudding and some blue dyed yogurt yesterday. There was a chaser of blue died apple nectar. On a happy note, he was insistent on holding the paper cup and drinking himself with the therapist keeping her hand on the cup just to ensure that we didn’t have a blue stained patient and bed to clean.

The first couple suctions from Mike’s trach were good. A few hours later the suctioned secretions were looking like they might be tinged with food product as you could see from the color. By 9 pm it was clear. Secretions suctioned were full of blue dye. Since I had carefully cleaned Mike’s mouth much earlier and the therapist and I had ensured his mouth was empty when he was done with the trial,

I am not sure what to make of this. Clearly he has delayed aspiration but I can’t figure out why it is so delayed and where it’s being stored. Guess it’s tube feeding and swallow training therapy a while longer. And the new PEG tube they put in yesterday will get some use after all.

Mike walked again yesterday. It’s hard while lugging along oxygen, tube feed, iv, and monitor. He did great and happily it took only one therapist to assist him to a seated position and stand and then back down. His strength is increasing daily. Mel (Mike’s sister) got to see him walk for the first time and she commented it made her misty eyed. I cried like a baby the first time I saw it. Mike has conquered and fought so much, so hard to get to that point it’s incredible.

Today they are requesting an order from the doc for portable telemetry. Assuming he writes it, Mike is headed to the PT gym on the 4th floor today.

Good Shepherd Specialty continued on with preparation of their standard appeal. Dr Daley, the physiatrist/Director of the neuro rehab paid Mike a visit. He’ll be writing a letter of his findings to Highmark to add to the Medical Director’s and the Nurse Practitioners findings.

The guy walked in the door and, because of the lighting, I could make out a shape only. This shape, who I didn’t recognize, brusquely but politely asked me to leave the room. I asked “Foooooor?” He explained that if he was to write a letter he wanted to asess Mike again first. His assessment needed to be unbiased and he wanted no hint of bias because I was present. By now I guessed who he was. He seems to be a really smart guy but very intense. He also seems to find me annoying. Just an impression I get. But then I guess a lot of people probably find me to be annoying. I surely can be. Wonder what they must actually think when I actually AM being annoying? Well. I digress. The guy is reported to be gifted clinically and he’s very good with Mike. Thus, I can overlook his sketchy social skills

Dr Daley exited the room, announcing to the therapists I was standing near, something like this “He follows bilateral two step crossover commands without visual cues” and looked at me like there you go! They were all beaming so I gathered this was good but said “I don’t know what that means” though I expect I had a clue. It was my stupid moment for the day. He explained…or one of them did…and he added “that’s good”. I wonder what he’d have thought if I followed through on my impulse to kiss him? I resisted and lost the impulse seconds later when he dismissed my question about meds rather abruptly. Guess I need to work on this ego thing. He informed me he’d be working on the letter last night and I guess their standard appeal packet will go out today or tomorrow.

Debbie came last evening and brought a deer hunting magazine for Mike. He read through it while they visited and then, in vintage Mike fashion, he folded it in half lengthwise and tucked it between mattress and guard rail to retrieve it later. Can I tell you how many publications I’ve retrieved from between the seat and arm of chairs over 31 years? Somehow, last evening, rather than annoying me, it made me jubilant

Resignedly Mike let me put the mittens on when it was time to sleep. I’ve explained to him that sometimes he forgets that he’s not supposed to pull on the tubes stuck in him and we don’t want him to hurt himself. They make him (and me!) very sad though he understands the rationale and finally accepts it.

As I left the hospital I reflected on the very rapid progress Mike has made this past week. And I couldn’t help but reflect on the fact that he was supposed to have been in neuro rehab exactly a week before but the Highmark devils (sorry I meant doctors of course) had put the kibosh to that with no apparent good reason. I had to wonder how much more progress he might have made with appropriate therapy for that week?

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