SUNDAY — a RECAP, mostly by Nancy

Happy days !   Loads of quiet sleep last night.  I even slept through the coyotes yelling.  Was awakened twice by Brittanys wanting to go outside, but John let them out.  Breakfast (non-leather fried lightly egg and a sausage link), tomato/V8 juice, and then pills.  We had bought a pill container allowing spaces for Morning, Noon and night for all meds for the week.  It took us awhile to fill the box. Today for lunch we went to our neighbors, who ordered in Chinese as their oven/stove quit working.  Yummy and a nice visit.  I was so happy to be able to join their family again. Came home and slept hard for 2 hours !

Okay… after being on-line on my laptop again today, and calling some people by phone, I realized that many of you had not heard the entire story.  Even those reading the blog would have missed on the beginning of this because John didn’t get it started till Dec. 4th.

So, here is a list of events starting in June that culminated in what happened.  John will have to add and make corrections, but here you’ll have the whole story and not have to sort it out.

In June 2009 I went to the ER when my doctor in Cle Elum could not see me because the clinic was closed to participate in a funeral for one of their own.   My Doc listened to my symptoms and told me to go in immediately and ask for all the doctors in ER to take my case.   I was very run down and had red spots on my lower legs, indicating internal bleeding.  They examined me, took an X-ray, and so on and the lead doctor decided to take blood for a culture.  The lungs appeared to show “a bit of pneumonia” but nothing jumped out at them as to what was wrong.  He admitted me to the hospital for further testing.

Two days later, the culture results indicated my bloodstream was full of bacteria – introduced, we suspect, in a late April dental cleaning.  The  “a bit of pneumonia” was fluid leaking into my lung from damaged cells.  When infecting the heart this is called endocarditis. The bacteria grew on the valves of my heart — the mitral valve was the worst, and I had known for years I had a heart murmur and was advised early to take a high dose of antibiotics before any teeth cleaning or anything that opened my blood to potential infection. I had done that in April, but apparently I was run down and the antibiotic did not protect me.

I was very ill and had much fluid build-up which, along with my heart issues, made me have difficulty breathing.  These symptoms were treated. I received a non-targeted or general antibiotic while cultures were done to determine the exact nature of the bacteria.  There were four – all treatable with Rocephin – and as by then I was no longer in imminent danger of dying I could leave the hospital. I had to go in as an outpatient for 28 days for infusions of Rocephin that lasted ½ hr.  This was done via a tube or PICC line from my elbow to just above my heart.  That solved the bacterial infection.

Afterwards, I visited both an internal infection specialist and a cardiologist in Yakima.  Visits continued till it was determined I had made enough progress to teach in the fall.  Our classes begin in late September.   I managed until the morning of the day following Thanksgiving – I woke at 3 A.M. with chest pains.  First time, so I told John I was having a heart attack.  We dressed fast and he drove me to ER in Ellensburg.  They took me in and called an ambulance, sending me off to Yakima Regional Hospital.  Once there I had my first operation (for which I was awake), to watch them search for a blood clot that lodged in an artery across and leading to the front of my heart.  This was accomplished in the cardiac catheterization room where a long thin tube, called a catheter, was threaded into a blood vessel and then guided to and dislodged the blockage.

That was Friday about 6 A.M.  I seemed to be fine on Friday but by noon on Saturday all my systems were shutting down.  By late afternoon I was taken to the intensive care unit and I was put on life support.  Tubes and wires and things I didn’t know about.  It looked like I was dying.  6 days completely sedated.  Two more of partial sedation –  still with breathing and feeding tubes—but I was aware of my surroundings.  The exact reason for my cardiopulmonary collapse remains a mystery.

At some point they found I was deathly “allergic” to Heparin, the major blood thinner used for all operations and even to flush PICC lines. An initial test for this came back negative – it was suspected in the shutdown – then later, a second test showed the very serious reaction.  [This reaction is called Heparin-induced thrombocytopenia (HIT) and I discussed it earlier.  JFH]

I started to improve and was moved to a different floor.  Then my heart missed a few beats and I was back in the ICU, picking up a temporary pacemaker on the way.  There were a couple of days of watchful waiting and plans to insert a regular pacemaker but my blood clotting ability wasn’t cooperating.  While the wait went on I wasn’t eating well and started to deteriorate again (or more).

The death spiral was halted by inserting an intra-aortic balloon pump (IABP) to assist my heart pumping functions. [This too, I covered earlier.  JFH]  The IABP resulted, just a few hours later, in my general improvement.  This was the expected result and it also indicated a good result from a mitral valve replacement.  First I would have to live through an open heart operation – that probability was not real high. I was in intensive care with 24 hr supervision as they worked to improve my health.  It wasn’t happening.

John and I and the doctors talked.  This is the definition of between a rock and a hard place.  I would die without the operation.  I might die during it. Take your pick!  John sat at home with the dogs and they took me from the ICU at 9 A.M. on Tuesday, 12/29/2009.  The heart surgeon’s nurse called John at 3:30 to say she left the operation as they were closing my chest back up, that I was alive, and doing well.

The actual procedures – two by-passes and one valve replacement – normally take this team about 3 ½ hours.  Because of being on a non-standard blood thinner the operation was extended another 4 hours – 3 hours with an open chest to visually monitor how I was doing, another after initial closing to watch the equipment that was watching me.  I spent 2 ½ days sedated and intubated and closely watched.  John spent one day away as I was aware and wanted to communicate and the nurse wanted me as quiet and still as I could be.

I was in intensive care until I left Jan 20th for a rehabilitation facility in Ellensburg.  Had there been a room available in the care unit called “advanced care” I could have been moved.  That floor remained full and none were sicker than me so I stayed put. That changed on January 18th and I was booted upstairs with little warning.  I stayed for two days in that room.  Then I came to Ellensburg.

I had to be in a skilled care facility.  I lost much muscle mass and could not get up from bed on my own, nor walk once up.  So, my leaving the facility hinged on my being able to get out of bed on my own, get to the potty on my own, and walking with the aid of a walker.  I had physical therapy 3 hours each day.  Even my tongue had lost muscle and I had trouble swallowing, food and pills. Some say that for each day of being down a 2 to 3 day recovery is required.  I’m not there yet but I progressed enough to make it home.  The great day arrived for my departure (as you heard in Saturday’s blog), and now I’m home and getting better each day.  I will go back to outpatient physical therapy 3 times/week at the rehab center.

Thanks for caring and asking.

Nancy

WEDNESDAY — 43 and counting

That’s hours!

About Noon on Friday Nancy will sign out of her guest lodgings.  As I write, that is just over 43.5 hours.  Saturday will be her first full-day home since Thanksgiving – 3 months.

Home, however is a mess.  The office she occupied at the university is empty.  Its contents, not counting what I have thrown out or given away, are now in our previously cluttered living space.  For a few days Nancy and her 3-wheeled walker will be severely restricted as to where they can go together.  The “un-approved” method of travel – what the physical therapist calls “furniture-walking” may take her a bit farther.

The way I see it, the more throwing away we do, the more her living space will expand.  Is that an incentive, or what?

TUESDAY — the reporter checks back in

Sunday was a non-event day.  There were a couple of visitors and me for lunch and supper.  By non-event I mean there was no therapy.  Nancy got a lot of rest.

Monday the therapy folks made her work hard.  Then as lunch was about over a tall thin fellow with a guitar and a fiddle, two young ladies, one with a guitar and one with a fiddle and a 2 year old – came to play for the patients.  The man came to Nancy’s building but the other three missed the fact that there are two facilities side-by-side, and they entered the other one.

For a short time the man was alone with assembled patients, a guitar and a fiddle.  He asked if anyone could play with him but no one was able so I got Nancy – she is in the adjacent room – and just as the two of them got started the other ladies showed up.  The man was from the upper mid-west and the ladies seemed to be local.  They all knew the tunes, though, and Nancy didn’t.  They would start a tune and she would have to pick it up and add what she could.  Some were story-songs the fellow had written.  It all worked quite well.  For the last song they powwowed with Nancy and agreed on a tune she knew.  She was most pleased.

When I got home I had a message on the recorder from a person in Yakima that wanted to tell Nancy about the latest blood test and what amounts of medication to take.

Tuesday morning I gave the number to Nancy and she called the person.  The conversation was a bit off-kilter because the lady felt she was responsible for reviewing tests and changing medications and, somehow, she didn’t know that Nancy was not at home and didn’t quite grasp that Nancy knew only that her blood had been taken – and nothing more until a rehab nurse brought the pills.  The nurse then talked to the lady in Yakima.  The source of confusion was never uncovered.  We don’t know who handled the med-change on either end.  However, when the nurse explained the change and the reason for it to Nancy and me we both understood what was being done and why.  We have never known the chain of data once the blood is drawn.  Were we supposed to?

I expect Nancy to leave rehab on Friday.  I think the decision is still to be made on Wednesday afternoon.

SATURDAY — 0.48

The distance traveled today was 0.48 mile, one way.  Double that and we still didn’t make a full mile in the car.  I should have zagged or zigged on the way to or from.  I wasn’t sure whether to zig or zag so I didn’t.

Nancy got in and out of the car just fine.  The 4-wheeled walker ‘just’ fit in the back.  These things do fold but are still large and odd shaped.  The place we visited is a series of apartments with mostly senior folk and from the gender of those that showed up, about 94% female.   A few came with walkers much like the one Nancy is using.  There were a couple of wheel chairs and maybe a cane or two.  There were snacks afterward but of the dry cookie type or small sandwich variety.  I could have made a meal of the stuff but Nancy is into moist and softer things and we didn’t stay.

Also, we needed to return to her room for a potty stop and then she needed a nap. She very much wants to participate but from getting going to getting back was about 2 hours and that, currently, is a lot for her.

Changing direction a little, we’ve noticed that on her lower legs her skin is peeling much as it would if sunburned and there is some general redness there also.  This is the location of the worst of the edema and visible swelling during her ICU stay.  I suspect a connection and have briefly searched on the ‘web’ with little success.  The search results I’m getting are all over the spectrum and not what I want.  I guess my search terms need improvement.  If you have any ideas on this issue you can let me – John –  know here:   nancyh@ellensburg.com

MONDAY — swans

A swan seems to take off with difficulty, some even say clumsily.  Once airborne the legs tuck in and the neck stretches out – and the clumsy becomes graceful in flight.

Nancy is close, but not yet able, to get started on her own.  Wheelchair, potties, and most beds are low and she just can’t quite get up from them.  In the PT room they have a bed that is higher off the floor.  From it Nancy can get her feet on the floor and with the high handles of her ‘walker’ she can establish vertical posture.  Then she is ready and able to travel.

The grace of a swan in flight?  Maybe not.

But grace, nonetheless.

SATURDAY — rant

Friday evening, with Nancy doing well, I decided I would stay home on Saturday morning.  So I did.  I stayed home this morning to do a few things and failed – not in staying home but in getting anything done.  Dogs and horses needed attention. Nancy called several times.

Her roommate’s daughter had stopped at a well know food place and bought a milkshake – “one of the best shakes in town.”  Nancy thought she might like one.  To kill two of us birds with one stone I decided to order my meal as well.  $10 later I was on my way.  Why does a small milkshake cost $3.00 when I can buy a half-gallon of ice cream (on sale) for the same price?

Next “milkshake day” I’ll make it at home and carry it in.  And don’t get me started on how little things cost when I was young!

It is late afternoon and I’ll soon be headed back to town.  We have 100% cloud cover and it is sprinkling and I have to go out and feed horses.  And the dogs want to go out and run in the muck – not a chance!

I’ve looked all over for a phone number she wants.  Can’t find it.

Ran her soiled shirts (blouses) through the laundry.  Then ran the dish washer just to claim I’d done something useful.

In December Nancy was in the hospital and I bought a cell phone.  It has a camera.  It isn’t of much use unless I can get the images from it to my computer.  It has “Bluetooth” and a USB port.  I haven’t figured out the Bluetooth thingy yet so I went (today) and bought the appropriate cable for the USB connector.  I just spent an hour trying to figure that out.  No luck.  So I will make another trek to the AT&T store to see if they have any idea.  If that doesn’t work I’ll have to go find an 8 year-old.

Rant over.

THURSDAY — catching up

It is late afternoon.  I just returned.  Early A.M. breakfast with Nancy.  Then home to take care of horses and dogs.  11 A.M. meeting with human resources folks at the U to begin final paper work to transition to full retirement.  Home for lunch.  To “rehab” facility carrying violin.  The group Nancy plays with, played at her place at 2 P.M. today.

The therapy folks had to finish with Nancy early today (nice of them to do that) so she could rest an hour before the musicians began arriving at about 1:45.  She has seen some of them (most maybe) since last playing with the group in November.  This was her first play-date in nearly 3 months.  It is fair to say they all had a grand time, especially her.  To the entire group and a couple of spouses — Bravo!  (Made me tear-up.)

Now I’m home fixing supper – then I’ll jump in the car for the fourth time today for a drive to town.  This trip is for a meeting of our horse riding club for whom I do a small monthly newsletter.

Yesterday, just to catch up, I did breakfast and supper with Nancy.  Lunch I did with a dozen riders (I skipped the ride).  They parked near a trailhead of the cross-state (old RR) trail that is close to a restaurant.  Today it is raining so they picked the best day of the week to ride.

Tomorrow is the “swallowing study” so I expect another interesting day.

TUESDAY — a lot like Monday

Nancy is still troubled by the process of getting pills down, food swallowed, and having it all proceed through as it is supposed to.  The upper end of her digestive system seems to take issue with what most of us would consider food.  However, she does fine with fortified liquid drinks, especially if chocolate infused.  She has also reached accommodation with yogurt (orange cream) and various puddings, and last night with supper she was given puréed strawberries. These are high calorie items and can be fortified with protein, vitamins, and minerals and so, nutrition-wise, she is being adequately supplied.

Much of the issue with real food develops with the acts of chewing and swallowing, and, of course preference.  A finely chopped egg or tuna mix (no bread) will suit her,  but ham salad mix will present a problem if the ham had a rind on it that wasn’t taken off prior to grinding or chopping.  She won’t deal with those pieces and in trying to separate them out much of the dish is trash.   A ground beef–noodles–sauce dish is no better than one with an outer rind because of pieces of gristle.  In this institutional setting there isn’t much hope for refinement.

With her physical abilities improving (slightly) each day we can look forward to the time when she is home and I can begin with better ingredients and take the time to improve them with selective cutting and discards.

She remains scheduled for a trip to the local hospital to have a “modified Barium swallow” study.  It will be something like this: She will be given small amounts of a Barium preparation of varying consistencies from thin liquids to paste to a piece of coated cookie. As each of these is ingested the examiner(s) will observe images in real time on a screen and determine if and where there are problems.  Nancy is scheduled for early afternoon this Friday and afterwards I will know more.

SUNDAY evening — off topic

Many years ago (1986) Nancy and I were traveling and ended up in McCall, Idaho on the day the space shuttle Challenger exploded.  We stayed in our room and watched the television reports for hours.  I hadn’t thought of that recently even on this weekend when NASA has been trying to launch Endeavour.  But today I was sent a link to a video of a bird named after that space shuttle and as there is nothing new this evening regarding Nancy I will simply suggest you first read about this bird here:

http://en.wikipedia.org/wiki/Challenger_(eagle)

Then copy-&-paste the following into a Google search window

Petopia: Challenger the Celebrity, Free-Flying Bald Eagle

and you should get a link to the page.  Click on it and than click to watch the video. There are other sites with this video but this one worked well for me.

If you are not from the USA you might not get the same thrill out of this as most US citizens do.  My own thought was that I will feel a similar emotion when I watch Nancy pass outside of the rehabilitation center under her own control and walk free.

TUESDAY — another survey

Nancy had a very busy day with therapy in the morning and a trip to Yakima and the doctor’s office in the afternoon.  Minus some stitches she returned about 4 P.M.  All is well.

The mail brought a survey form from the hospital.  We have both been responsible for surveys – in-person varity and mail type.  We are very critical of these one-size-fits-all forms.  Acutally, we hate them.

I wrote a response to this one and show it below.  I will tell you in advance that Question #8 asks if her bathroom was kept clean.  In the ICU there is no bathroom.  So, my response:

> > > > > > > > > >

Dear Mr. ——————-,

My wife, Nancy, entered your hospital early morning on Friday after Thanksgiving via an emergency transfer from Kittitas Valley Community Hospital.  Her treatment in the catheterization lab went well and she expressed satisfaction with those that treated her.  However, by Saturday afternoon she experienced a complete cardiopulmonary collapse and was in the ICU, completely sedated, for eight days.  Before she was brought out of sedation I received, at home, a survey form asking her thoughts on how well she was treated.  I returned the form with this message:

I suggest you and your staff consider adding another step in your patient surveys protocol.  Namely, before sending this form you ought to determine the whereabouts and medical status of the recipient.

Later Nancy was taken from the ICU to the ACU and two days later sent back to the Cath Lab for a temporary pacemaker and then to the ICU again.  I received another survey.  I wrote a second letter, thought about it for a day – and never delivered it.

Nancy had open heart surgery on Dec. 29th and was discharged and sent to a rehabilitation facility on Jan. 20, 2010.  Total days in your hospital: 55

The discharge triggered the current survey request.

I can assure you that Nancy is very thankful to be alive and gives the credit for that to the doctors, nurses, and staff of Yakima Regional.  Also, I can assure you that answering this survey would require that Nancy make guesses and assumptions and/or leave things unanswered.

I will provide just two examples of where the survey form, if answered, would suggest a false or inappropriate idea.  Question #9 “was the area around your room quiet at night?”  The correct answer is almost never.  That sounds bad – except she was in the ICU for 51 of the 55 days.  What should one expect in a place with the key word of the title being “intensive?”  Question #23 “the admission process.”  First, she doesn’t remember being admitted in any formal sense.  I guess it depends on one’s viewpoint as to whether that is a “best” or a “worst” experience.  If she wasn’t admitted she could have gotten hung up in the system like “poor Ol’Charlie on the MTA.”  I guess I will ask you to look at question #8, also.  Knowing she was in an ICU bed for 51 days how would you suggest she answer that?

Also, we think she is “white” (Q.#27) but some family members think her DNA is a little suspect.  Her mother gave her the middle name “Lee” as in Robert E. Lee to compensate, claiming relationship.  Touchy subject.

Yes, she does recommend Yakima Regional Medical & Cardiac Center to anyone, including family and friends (Q.#22).  No we do not like these surveys.

She is currently here:

Nancy B. Hultquist    Room 28

Kittitas Valley Health & Rehabilitation Center

1050 East Mountain View

Ellensburg, WA  98926

Please feel free to visit and ask any questions you like.

Sincerely,