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....