Sick & Tired of Sick & Tired

Dad came home from hospital on Nov 20th. We celebrated his 71st birthday on Nov 24th. Today, Nov 29th, we experienced the 5th Emergency Room visit in the past four months.... all eerily similar  - and yet, still very mysterious.

Yesterday, he felt better, stronger - driving to book group with friends, carving in his studio - enjoying annual post-Thanksgiving Turkey Tetrazzini (gluten-free and low in sodium, of course)....

This morning, something went awry - Mom found him in his recliner, feverish and sweating, incoherent, slow, red-in-the-face, huffing in a very tell-tale way....

And so it was yet another day of unknowing, of waiting, of being at the effect of "the system" (that, according to Dad and me and Mom and Scott, is beyond inefficient)... the Hospitalist appeared around 6:00 pm.  (This, after Dad has spent day in ER down the hall from a man in striped uniform with dried blood dripping from forehead to chin and another gray & black striped prisoner handcuffed to his bed - challenging the officer on duty for nearly 8 hours). She (hospitalist dr)  entered the room with her entourage of six students, asking lots of good, inquisitive questions and checking on all pertinent info....

from my seat in the peanut gallery, it felt very "House"-like and I could only hope that following the queries, this remarkably astute and competitive and caring group might assemble in their quarters to discuss and elaborate and argue about what is and is not at play in Dad's particular health situation....

Still, regardless of answers or TV crews, he improved all day long.... if only we could trust that it would continue...  like a TV series where they leave you hanging, longing for the next evolution -- somewhere here is a very necessary "missing piece" - where oh when will we find it?

Not at all sure what tomorrow brings....

Breath by Breath,
Robin

Home again, home again, jiggetyjig

"There's no place like home, there's no place like home." ~Dorothy

Dad came home again yesterday in the late afternoon!

Huge sigh of relief - so good to be out of that sterile, frustrating hospital scene.
It's funny that I titled this with "Jiggety Jig" because I see I did the same the last time I posted about his return from the hospital.... the reason for that, I guess, is because whenever we would return from vacations or other day excursions that involved an extended time away from home, Dad would always say that as we pulled into the drive -- and, to this day, I still hear it in my head. :-)

Here is a letter he wrote and sent via email yesterday - many of you may have seen it already, but it seems as if it should be here for posterity (whatever that means)...

Dick’s health status, 11-17-12

I returned home from the hospital yet again today from a 6 day stay recovering from pneumonia.  This was the 4^th stay in hospitals in the last 4 months based on a continuing bout with pneumonia.

I insisted this visit we find the underlying cause of continued infection and sought the help of the head hospital Doctor, the infectious disease doctors, my Churg-Strauss doctor and others as required.  They ran more blood and sputum cultures, took more x-rays and CT scans and tried isolating and killing the unique strain of resistant pseudomonas that is probably causing the problem.  We’re not certain the problem is fixed but I am feeling much better than a week ago.  

The plan now is a continuing treatment of cefepine (antibiotic), an IV administered at home for several more days followed by another antibiotic by mouth for several weeks to see if we can kill the bad guys that cause the pneumonia to continue to return.  Two problems are cause for concern in this or any treatment plan.. my Churg-Strauss has left “pockets or small craters” in my lungs trapping the infection and making it harder to kill .. and my continued use of prednisone (steroid) which lowers my immune system and resistance to infection. 

There are no easy answers here .. and we are in the area of trial and error .. however, I continue to beat the odds each time I return from the hospital.  On the morning before this visit I was very weak and fell on the way to the bathroom .. hitting my lower back and now I’m in pain from that event as well.  It’s a bitch getting old!!

Carol has been at my side throughout these hospital trips .. in fact, she has been the key decision maker  in calling 911 and getting me treatment even as I resisted another trip to the hospital.  Both of us wish all of this would go away.

Thanks you all for your support, prayers, ideas and calls.  They mean a lot to us as we go though these health issues.

Dick

Squeaky Wheel

"I think it's true what they say about the squeaky wheel, always getting the grease" 
~James Taylor

As of yesterday, Dad was commanding some major attention at University Hospital in Cincinnati.  No, there weren't any news crews or paparazzi, but he has managed to successfully meet with the hospital Head Nurse, Head Doctor and get a whole Infectious Diseases Team on board to try to determine just what is going on in his system that keeps causing him to get sick and return to the hospital time and again (and again).

Not only did he garner attention from the high powers of University Hospital, but he even got a visit from the doctor who has been his Churg-Strauss specialist for the past 12 years.  He stopped by Dad's room on 7th floor yesterday to consult, oversee and bless ongoing action -- this, in the world of the current medical system is nothing short of a miracle. Anyone who knows Dad will not be surprised that he is taking charge and reporting those who fail to care for him properly, I am sure -- (actually, what is surprising is that it took this long! ;-))

Anyway, he is pleased to see people in action, even though it means they are poking, prodding, sticking and running more tests, of course.

The chest X-ray yesterday showed that is lungs look better now than when he arrived on Monday, so that is good. He continues to cough a lot, though, and sleeps sitting up (when he is allowed to sleep, that is - which never seems to be for longer than hour and a half stretches.... for the life of me, I cannot figure out how it is that the medical system doesn't seem to place any value whatsoever on the healing power of SLEEP.... sigh -- all those years of medical school and common sense gets lost in the ludicrosity of bureaucratic system-ology - ahem, please excuse my rant - and made-up words).

Fingers crossed that system-ology and medical team and Dad's lungs and blood pressure and oxygen levels and blood sugar and everything else align for him to return home tomorro. Sounds like they may give him a pic-line (sp?) to administer ongoing antibiotics at home, which would also mean he'd have a home visit nurse for awhile --- that would be reassuring, but we'll wait and see what today brings.... things are ever-changing, depending whose shift it is and what the test results reveal....

Thanks for your prayers and good thoughts - it means more than you know.

Breath by breath,
Robin

Rainy Day Monday

"The best thing one can do when it's raining is to let it rain." 

Henry Wadsworth Longfellow 

A rainy Monday morning here in Cincinnati. 

Dad has been struggling to regain his strength and quiet his cough since arriving back home to Ohio after the long road trip from S. Carolina just one week ago today. Scott and I visited with them on Thoroughbred Lane between 4:00-5:30 yesterday, enjoying some brie, crackers and conversation as well as the aroma of pot roast and veggies and homemade gluten-free chocolate chip cookies.  We left just before dinnertime, as it is important for Dad to maintain his mealtime routines in order to properly manage his blood sugar. 

Health-wise, he moved slowly, often short of breath and complained about chronic weakness and inability to rally. Both Mom and Dad were less than thrilled at the prospect of the neurologist appointment he had on the schedule for this morning at 8:00 am.  Mom told us how challenging things are even on the best of mornings, stating that Dad seems to be only partially himself for the first few hours of the day. She says that until he's up awhile, eaten, taken his insulin and a breathing treatment, it's like he's in a sort of "stupor" (to which he, of course responded, "Who are you calling stupid?") Nonetheless, they were pretty much set to heroically do whatever it took to get there, since all other available appointments were far in the future. As we left yesterday evening, we wished them well, telling them not to hesitate to call if they needed anything. 

7:20 this morning, the phone rang. 

Mom said that when they woke at 6:30 am to prepare, they quickly determined there was no way they could manage it. She called to cancel and they both went back to bed (which means he went to his recliner in the den; she to the bed in their room). Somehow, he lost his balance and fell hard against the wall behind his chair. He banged his back and, once down, didn't have the strength to get up. Luckily, she was still awake and immediately called both us and 911. 

They determined that his temperature was over 103, his heart rate was very high, blood pressure low - and once again, took him to University Hospital by ambulance. 

We all arrived there by 8:30 am. They determined relatively quickly he would be admitted, however, by noon, we were still in the tiny ER room and he was pretty agitated with the service in the joint - he had not gotten the promised meal, could not get his insulin, nor could they fulfill on the seemingly simple request for a pillow to put behind his aching back. 

At this point, I don't have much clarity to offer regarding his condition. When we left, his fever was down below 100. His back pain was slightly less once the pain med kicked in. He still has pneumonia and the chest X-ray showed that his lungs look worse now than they did on his previous admittance to this hospital in September. They X-rayed his back, but I do not know the results. They were running blood work, and I know they were looking for sepsis, among other clues to his current status. He is in a private room on the 7th floor, which likely means the next time we visit, we'll be wearing a mask. Mom is tired and weary, but comforting and full of positive good humor and tender back rubs. Dad is really sick of being sick. We are all very grateful for all of the prayers and good thoughts and energy coming our way, thank you.

Breath by breath,

~Robin

p.s. I got this in my inbox today from Nic Askew, a talented poet and videographer to whom I subscribe, and it seemed pertinent....

sending hope and strength

I am a bit surprised myself to see how and where I left this blog - so telling, really, of the bizarre and wrong principle that when things seem to be working, we divert the oh-so necessary attention to other things.

Whilst things were questionable, here I was, defining, clarifying, sharing - casting light on shadow.
And then the light came back and I - we - once again got quiet, trusting that the wellness might be fully appreciated simply for being delightful, in and of itself.
And I'm certain, it has been.

Still, tonight, we find ourselves elsewhere.... Mom and Dad in their Carolina home, us here and Dad, once again, sick. Mom, once again, facing the many facets of "very sick man" on her own.

We will reveal more specific details tomorrow, I am sure. Meanwhile..... thank you for reading and caring - so much LOVE to all...

~Robin

"Keep on keeping on..."

"It was a busy day," said Dad.

This is good, as they are doing all they can to coordinate care so he will be ready to go home tomorrow.

Mom and Dad intended to attend the Heart Failure class held in hospital at 10:00 am, but, due to coordination mis-haps, they didn't get there in time.... so, true to form, the class came to him. Hard lessons from a wise woman with a medium sized salt shaker. Dad says, "Things are going to change."

A-yup.

Also says that Carol is already taking on the challenge of how to prepare tasty meals that combine gluten-free, sugar-free and salt-free.... Well, one thing I know is - if anyone can rise to that challenge - it's my mom ;-) (you know it's true)

They had another "visitor" to help coordinate home health care options - (there are options? Why, yes, there are!) and there will be a nurse to come into their home for the four days following his return to check on the "picc-line," continuing intravenous meds, other meds, vitals, etc. This is comforting, too.

Also had a visit from Diabetes Specialist to help clarify how to measure blood sugar levels and pinpoint timing and dosing of insulin. This has been tricky and mysterious, so having a chart, a plan and knowledge is massively helpful, imo. Dad said something to that effect, too - though not as mushy or gushy as me.

Busy day? I believe he scheduled an appointment with his pulmonary doctor later this week, too.

Busy day? Yes - he even kept a previously scheduled call with one of his SCORE clients, happy to fulfill his consultant/counselor/mentor role and move yet another business vision forward. Can you say "keep on keeping on"?

"I feel like I am breathing more clearly than I have in months," he says. And he may even attempt to sleep IN the ever-present hospital bed (vs. recliner chair) tonight.

I hope that as I write this, he is resting, dreaming and potassium levels are gaining ground, while resting quiet and calm in bed, in preparation for a return to home tomorrow.

Breath by breath,
Robin

New View, My Amazing Mom and Instant Messages

We don't see things as they are, we see them as we are.

Anaïs Nin 

View from Dad's new room, sunset Monday 9/10/12

It's actually hard to stay away all day, even though we know Dad most wants us to all be going about our regular lives as if this latest health scare isn't of utmost importance to us.... As if his low potassium and lack of rest last night doesn't affect us at all... As if we don't go about the duties of daily life constantly wondering if there is somewhere more important, meaningful and relevant  (on the cosmic scale)  for our time, attention, energy to be devoted. 

Sometimes I think he forgets that he is not a "project" we can manage - there is no strategic plan (at least not one we can comprehend and follow) or Excel spreadsheet that can inform us of priorities right now. This is an entirely different realm. I don't understand it either... I just understand that it's impossible to understand.
Today, he got a new room with a new view. He didn't request or even want it. Moving seemed like a pain, didn't ask for it, and didn't know how the next room might compare.... 
So.... at this point they are talking about sending Dad home Wednesday. I am supposed to fly to FLA on Wednesday. Both Mom and Dad have made this trip to a business conference possible for me and for Mallory and are insistent that we go. We are really excited and eager for the experience, but, I have to say, it is hard to leave. 

Mom is so amazing! Dad told me tonight how impressed and proud he is of Carol and how well she has been dealing with all of this.... Even instructed me (in his subtle way) to say so on the blog (but just so you both know, I would have anyway!!). His words were so heartfelt and sweet, brings tears to my eyes here now in translation. 

Please chime in and be available to her and to Dad, even though they will try to convince you they have it all under control.... and maybe they do... but, truth is, we all need one another....

But when we arrived in the new room to visit this evening, we all agreed it was better. Oh, at certain times of day, the view may be inferior, but when we arrived, it was obvious we were facing west - the sun was setting  - it was quite beautiful. Dad was free of all those damn "spaghetti wires" that require him to be attached to the wall and free of things that continually go "BEEP" - it wasn't in our hands, but this move seems, by all measures, to be an improvement.

Oh, and Just call me the messenger.... Sharing (the really good, wise, worthwhile, kind and inspiring) FB messages from this evening - thanks and love to Dad and all <3

Breath by breath,
Robin

Robin OK

2 hours ago near Hartwell via mobile

On way to visit dad now. If you have a message, we can be your messenger...

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  Jessica Koock, Gary Johnston and 2 others like this.
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    Mallory Matson I love love love him!!

    2 hours ago via mobile ·  · 1
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    Maureen Wood It seems like we should all know your dad

    2 hours ago ·  · 1
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    Terri Doerr Be strong & get well! HUGS to him and YOU

    2 hours ago via mobile ·  · 1
  • 
    

    Tina Marks In through the nose, out through the mouth! ;)

    about an hour ago ·  · 1
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    Hill Duh in with the good, out with the bad!

    about an hour ago ·  · 1

Happy Grandparents Day

An hour with your grandchildren can make you feel young again.  

Anything longer than that, and you start to age quickly.  

~Gene Perre

Girls and I had a nice visit with Papa today, Grandparents' Day. Jon would have been there, too, except he's been sick all week and that just wouldn't do. (So, since he's actually feeling much better, I had him vacuum the whole house in our absence - he did a good job. ;-)

 Yesterday, I told Dad we'd be there after church, around 1:00. He said, "I'll expect you at 1:30." (he knows us well :-) Ultimately, we got there around 3:00 pm.  Both Gma and Papa were very gracious, without rush, seeming to appreciate our arrival when-ever. 

They started Dad on heart med today, not long before we got there. Mom was pleased to tell us that his blood pressure, heart rate and oxygen counts all seemed to be heading in the right direction following the first dose. 

Mid-way into our visit, we consulted with the tell-tale screen...

... concerned that the top green number of 74 was illustrating very low Oxygen levels... exploring whether or not Dad had re-inserted Oxygen into his nostrils, whether he had "reader" accurately connected to his index finger, suggesting he might want to check with his nurse....

Of course, Dad dismissed at first... but after a bit, started noticing dizzy-woozy-ness, asked about current numbers (he can't see them)... we reported mid-70s. 

"Maybe we should call your nurse in," says I.

Nurse and respiratory dude arrive quickly, take a look at the screen and say "Your Oxygen is at 97 - that's pretty good." 

Major oops - Realize we confused heart rate number (green) with oxygen level number (blue) - duh.

Counts are good and getting better.... Please keep your prayers coming!

Breath by breath,

Robin

"It was a day"...

Fear less, hope more; eat less, chew more; whine less, breathe more; 

talk less, say more; hate less, love more; and all good things are yours.  

~Swedish Proverb

"It was a day."

 I can't remember where this quote comes from, but it resonates like a simple, beautiful truth.  

Today, we learned that Dad has "heart failure," whatever the specific definition of that might be (right side, left side; congestive, vascular; words) in Dad's case. I have a hard time comprehending all of the info that comes directly from the "specialist," much less translating what I heard via 3rd party sources - I wasn't there when the Cardiologist came today to share the findings of the Echo-Cardiogram, but I did gather that the info the technician offered last night was not on target.... 

I may have this so wrong, but it sounds like Dad's heart has been sub-par (yes, I used a golf term on purpose) for awhile now - at least a few months... but, it was only today that this fact was clearly defined (and offered explanation for existing blood pressure and weakness mysteries) for me, so maybe I'm not the only one. And, while it is not welcome or happy news, it really doesn't change anything - it's been there, unsaid, doing its work without our permission - for some time now. What changes is the fact that we now have access to confront it with awareness and ammunition. Dad is grieving the loss of "salt," especially his Planter's Peanut habit.... but I know, with a strategic plan, he can rally the diet thing. This is treatable. 

Also clarified that he is dealing with infection in his lungs and that is being treated via intensive antibiotics - also treatable, thank goodness.

But this is not what I intended to write about... 

If I'm to follow the proverb, then what I want to do is "talk less, say more." Following that, I want to say I love, respect and am so inspired by my parents. These situations reveal who and what people are.  What I see in them is real, profound love of the most genuine variety. Over the past 49 years, they  have created a bond that is powerful, unbreakable and (I do not say this lightly) quite remarkable. 

They're talking about sending Dad home early next week... and that's a good thing,

Breath by breath,

Robin

Jello Clues?

"The greatest treasures are those invisible to the eye, but found in the heart."

So, apparently, when they brought Dad's long-awaited meal last night, he was less than thrilled to get sugar-free Jello instead of the vanilla ice-cream he had very clearly ordered.

Upon questioning, he was told (unbeknownst to any of us previously) that his doctor has now ordered a "cardiac diet," based on info revealed in the Echo Cardiogram. Most we know at this point is that the left side of his heart is not pumping as strongly as it should.

The cardiologist is supposed to come reveal more around 10:00 am....

Breath by breath,
Robin

Inhale, Exhale, Heart, Humor, Life

You know that our breathing is the inhaling and exhaling of air.  

The organ that serves for this is the lungs that lie round the heart, 

so that the air passing through them thereby envelops the heart.  

Thus breathing is a natural way to the heart.  

And so, having collected your mind within you, lead it into the channel of breathing through which air reaches the heart and, together with this inhaled air, 

force your mind to descend into the heart and to remain there.  

~Nicephorus the Solitary

Heart testing - Echo-cardiogram - happened this morning before we arrived. Technician told dad it's only his job to complete the exam - can't read results, but didn't see anything blatantly wrong. Still waiting for "official" results from those whose job it is to read results.

Lung testing - Bronchoscopy - originally scheduled for 1:00 pm, finally transpired round about 3:15 ("hospital time"). Dad was amazingly patient, considering they have had him fasting since lunchtime on Thursday so that he would be ready and able to complete this miserable test.

All trying, mysterious, uncertain... yet here are some priceless sound-bytes in recovery room thanks to Dad under-semi-anesthesia...

"So, they took me back there and poured this tylenol numbing stuff down my throat, made me swallow it - and I said, 'First thing I get to consume in 15 hours and it tastes like shit!"

We all genuinely laugh on cue. He waits for lull, then....

"So.... they gave me some more."

More laughing behind our face masks, amidst knowing above the mask loving eye contact....

Then, can't you mix it with Scotch?"

Haha! Funny man!

Goes on to tell us, "Then they all put on these yellow outfits...."

Cough, splutter, kinda scary intense coughing fit that goes on a long while...

".... and I told 'em they look like a bunch of crazy yellow canaries."

Ba hahahaha....

So what do we know?

Know that his oxygen and blood pressure have been improving today, if ever so slightly. Know that he made it through lots of trying tests today in pretty heroic ways that will hopefully provide the info to make best decisions going forward.

Know that we are all in this together - heart to lung, lung to heart, breath to heart, heart to heart.

Breath by breath,
Robin

A Good Night brings a Brighter Morn

"Breath is the bridge which connects life to consciousness, which unites your body to your thoughts."  ~Thich Nhat Hanh

So, when I got up, checked my email and saw 3 or 4 FW'd messages there from "Richard O'Neal," it seemed a good sign ;-).....

Then, he called Scott (the go-to guy in health matters, no doubt) to report that blood pressure and oxygen counts are up and he'd been given the green light to have two procedures done today:

(1) Echo Cardiogram to check out stuff with his heart (no clear issues that we are previously aware of, but seems there are some other signs that indicate this test is advisable at this point).

(2) Bronchoscopy, in which they probe and take samples directly from his lung tissues. This test will hopefully clarify whether the primary issue right now is being caused by infection (pneumonia) or by progression of his Churg-Strauss disease. Based on the findings, the doctors will be able to make the best recommendation for ongoing treatment.

We will be heading to University Hospital 7th floor very shortly, where we will don our bug-like masks to enter Dad's room and give hugs and encouragement prior to bronchoscopy at 1:00 pm. Not sure just how long it takes to do procedure or get results. Welcome any and all prayers raised up during that time for him and for his doctors and nurses, as well as for clarity in the findings and necessary treatment to follow.

Feel free to leave comments here for Dad - I'm sure he'd appreciate your good wishes <3

Breath by breath,
Robin

Message from Mom

We are starting this blog so we can keep everyone in the loop with Dad's health progress. Things in the weird realm of health crisis and hospitals and tests and being a patient and meds, etc etc etc (ad nauseum) tend to take on a bizarre life of their own and it becomes challenging to recall who said what when or why and how you got from point A to point B... so this ongoing blog will not only help us to effectively keep family, friends and loved ones in the loop, but it will serve to jog our memory about the journey. 

So, to get started.... 

Here's an email message Mom sent with info about Wed night through Thurs night this week.....

Just to let everyone know,  last night, we called the EMT's again, and they took Dick to Univ. Hospital in Cincinnati, where his  Churg- Strauss specialist is.  They are currently trying to determine what is Churg- Strauss and what is probably pneumonia, and what particular strain it is.  Tomorrow, if his BP is up enough, the plan to do a bronchoscopy to find this out.  He is weak and coughing a lot and is very sick.  Robin and Scott and I are spending time there and are pleased that we chose to take him to University, even though it is a "trek" to get there.  I think he is getting good and intensive care, is in a unit that falls between ICU and the regular patient floors.  When we left at about 3:30 today, he was finally in a lull of care where he  could possibly get a bit of rest.

Can't say we "need" anything, but your continued thoughts and prayers, and will try to keep you up to date.

Love, Carol