MONDAY — on the food front

Some progress was made on the food issues today.  The speech and swallowing specialist worked with Nancy prior to lunch and then came to her room to watch while she chewed and swallowed.  When one doesn’t swallow well it is called dysphagia, or disordered swallowing.

To get proper nutrition food has to be prepared in a manner to make it easy to swallow and some foods have to be avoided.  We have assumed, in Nancy’s case, that her difficulties originated from the insertion of a breathing tube (endotracheal intubation) in the ICU.  There is a possibility that her problem preceded that and the intubation just added to an existing issue.

As early as last spring we recall some episodes of her not being able to swallow well, followed by spitting up something she had just tried to swallow.  This may be a false lead and her problem might clear up with a bit more time and exercise.  Swallowing a liquid such as water or anything else like water can be a problem because it goes down so quickly that your throat, being a bit out of practice, doesn’t have time to close off the airway.  Liquids that are a bit thicker – tomato juice, say – allow more time for a sluggish throat to function.  Thickened soups and drinks are recommended.

So, the dysphagia consultant examined the food in Nancy’s lunch.  There was ground meat (beef, maybe) with a gravy and mashed potatoes without gravy.  Well the problem with ground beef is that when cooked it adheres together (think of a grilled burger – if it didn’t stick together it would fall through the bars of the grill).  Thus, the meat portion met the letter of the directive but not the intent.  The consultant took it back to the kitchen and came back with the stuff newly ground.  That helped.

At supper the protein portion (tuna, I think) was prepared properly and brought in a bowl, that is, not as a sandwich.  No chewy sticky bread is good.  A thin watery soup accompanied the meal.  Not good.

I keep two canisters of yogurt in a small ice filled cooler in her closet.  We used one of those with supper to help add calories and nutrients.  The soup went back to the kitchen untouched.  I suppose I will be carrying corn starch or tapioca in small plastic bags to add to soups such as that tonight.  Carrying small bags of white power around in these troubled times seems to be unwise, however.  I may rethink this issue.

SUNDAY — a lazy day

At this point a don’t consider a lazy day as being a good day.  Without weekend therapists Nancy doesn’t get out of bed.  She does move her arms and legs but there is very little stress on the “getting going” muscles.

I hope this stage is soon over and she can get in the chair and scoot around the halls on her own.  I don’t think she minds the inactivity as much as I do.  Getting up, in the chair, and then standing and walking is very hard for her now – a real exertion even with help.

She will go to a doctor’s appointment in Yakima on Tuesday afternoon.  This ride will be in a wheelchair in a van.  We expect she will get the stitches out where the chest drain holes are (were) but we do not have an idea what else will be accomplished.

We also think her current roommate will be going home on Tuesday.

Good or not, this week will bring some changes.

SATURDAY — Trying to keep track

Saturday and Sunday are off days for therapy so Nancy has directions to move body parts while in bed.  Does she do that? I don’t know.  She does fire-up her cell phone and so must use her hands, arms, and voice.  She tires easily, so that activity is still a bit limited.

On another topic, I had to deal with the local hospital about our share of the payments from last summer’s treatment (June & July).  Nancy entered the hospital via the emergency room, was admitted, and then had out-patient treatment after that.  These episodes triggered 3 billing events.

The billing agent has to submitted to the insurance company.  What they don’t pay is submitted to Medicare.  The remainder is our responsibility.

The hospital software is triggered at the end of each month to send us an overdue notice even though Medicare has yet to be heard from.  The billing agent must intervene manually to stop this overdue notice but may forget.  Then we get 3, more or less, identical letters (billing code and amount differ).  None of these do we have to pay but I had to call and remind the agent to do whatever the software requires (reset the date, I guess).

I say “we don’t have to pay” but, in fact, we will have to pay some part of them eventually but what and when are not known.  Anyway, so as to show our intent to pay we set up an auto-withdrawal from our bank to the hospital – so how does one be late with a payment when it is triggered by the hospital requesting if from the bank?   After the visit to the emergency room on Friday following Thanksgiving there was another $2,000 tacked on so I wanted to up the auto-payment.  How does one do that?  Nancy did it the first time.   The lady at the bank says I need Nancy’s password.  Fine.  She is totally sedated.  I had to wait until she was brought out of the (?) dark.  I had just gone through this same sort of thing with a credit union because a staffer there wrote 12/15/09 on a piece of paper and not 11/15/09.  I spent 25 minutes listening to ugly “on hold” music before I could get them to fix that.  What fun!

I would like to explain, but can’t, the three nearly identical pages of “this is not a bill” but it is an “important tax document” that I got from the insurance company.  An imaging firm (not part of the hospital) billed for reading 3 x-rays or something but the hospital had not yet billed for anything.  That’s still a mystery.

This past Friday the postal service brought a fancy multi-colored check – $64.92 – from the local hospital with accompanying documentation saying Invoice #CEMC4525.  It appears as though I billed them for something and they are paying me. I have no idea what this is about.  On Monday I will have to call the agent and inquire.

I have the feeling this is all going to get worse.

FRIDAY — end of a long week

I went in early today and was in the PT room while Nancy did the therapy thing.  Among various exercises they got her out of her chair and with the support of the ‘walker’ she managed about 100 feet.  They did this three times starting from the chair each time.

We name things strangely.  For example we claim to park on a driveway and drive on a parkway.  We all know to get olive oil they squeeze olives. So, then, how do we get baby oil?  The ‘walker’ isn’t properly named.  It doesn’t walk, even when you push it.  It slides.  They seem to have rubber cups or tennis balls on the end of the legs.  If it has wheels, it rolls.  If it has both does it slide-roll?  We should call it a slideroller.

Anyway, that is the most exercise she has had since she walked to the car the morning she was having the heart attack – November 27th.  This was more difficult.  We applauded when she finished the third trip.

THURSDAY — not much that’s new

Nancy is making slow progress with regaining her physical abilities.  They had her using a walker today and the two PTs (physical therapists) with her did not have to save her from falling or anything else.  She didn’t go far but she did move her self around and about.  They help her stand-into-the-walker and then return to a seated position in the wheelchair.  She stayed in the chair for awhile after returning to the room and then a PT visited the room to help her stand, swivel, sit, and pivot back into bed.  None of this is she able to do on her own but they are helping her do it – not doing it for her.

The food leaves a lot to be desired but I’m supplementing by sharing a milkshake with her and carrying in yogurt.  She did have a soup tonight that was good but the sliced tomatoes, while red, were not.  I suspect that the meals are crafted to provide complete nutrition for the day if the person eats all (or most all)  of the three meals.  That’s not happening with her and probably not with most of the residents.

Visitors brought both flowers and candy today  — she ate the flowers and I ate the candy.  Just kidding.  Actually, the flower was a potted one and I can bring it home, find a bigger planter for it, and keep it going as an inside plant – it is a white Kalanchoe.  You can find a picture of a red one here:

WEDNESDAY — slips to Thursday

Last evening, when I normally would have been writing something for here, I responded to a batch of e-mails and just as I finished with those the phone carried a call from a friend.

She and I share the unwelcome situation of have spouses that suffered major heart related illness in 2009.  This also means that her husband and Nancy have many experiences to compare.  He had a major heart attack last spring that culminated in a heart transplant late in the fall.  They live in  a sparsely populated mountainous area remote from a major medical center and so he has been hundreds of miles away – and still is.

We each knew of the unfolding medical issues of the other but keeping in communication was nearly impossible.  Thus, we had a long phone call and when it was over I had some chores to do and never thought again of making my “occasional” update about Nancy.

She is still doing well – I’ve talked to her twice this Thursday morning – and I will remember to get something on here tonight.

TUESDAY — another day, another pound

They added weights to Nancy’s ankles, one pound each, part way through the workout today.  That’s how progress is measured.

Actually, they had to.  She now weighs less than when we married in 1969.

That seems like another world and another lifetime ago.

Maybe the physical therapy will redistribute the remaining excess stuff a little but I suspect this weight loss thing will cease as she rebuilds some muscle.

When she lost some weight last summer we went to a few garage sales and picked up a few things and also ordered a few things from a company that started and grew along with my father’s family back in Warren, Pennsylvania.  History here:

Our family never got involved except I’ve had cousins work there and they and other family members would buy returned goods on special days (at pennies on the dollar).  That’s our once-upon-a-time connection in case you need to know why we buy clothes from a small company in a small town in a place we have never lived.

The clothes purchased last summer are now too large.  Guess what’s next?

MONDAY — not so random thoughts

If we consider last Friday to encompass part assessment and part therapy then today was the first real day of working on rehabilitation.  Nancy seemed happy with today.  When in bed she really has nothing to do although she has done a little reading and a little phoning.

Reading for entertainment is not something she is accustomed to but I have a few magazines, mainly the Smithsonian, with articles she will read.

Too much time on the phone drains the batteries and she can’t manage yet to reach the outlets to keep it charged.  She always wants to have a little power left to call me if she thinks of something I need to know, do, or bring.  And her voice, hands, and arms are not as strong as needed to talk for long.

The point of the above is that I think she is happy for the interruptions to having nothing to do brought on by the therapy sessions – speech, occupational, and physical.  All are necessary but returning to a normal existence means being able to get out of bed and walk without assistance and that she cannot now do.

If she can get to the point where she can get into a wheelchair on her own then she can prowl the building and become engaged in other things and other people.  There is a piano in a community room and she could maybe brush up on her skills.  We will have to check on that as they may limit access to the piano to certain times and people.  A lady from town came and played a few days ago for some of the residents and does so weekly.  She then visited Nancy as they know each other via a university activity.  Playing piano ought to be good therapy and self entertainment.  I’ll have to get her to ask about this.

SUNDAY — visitors

Visitors – that is about it.  Several people visited Nancy today but there was not a scheduled event in the sense of, say, physical therapy.  Her food trays continue to have a small drink that we thought was a mixture of something and cranberry juice.  No so claims tonight’s server.  I thought the something was white grape juice.  The color, if not from cranberries, must be Red Dye #40.  Just one of life’s little mysteries.

Nancy has been moving her legs more while in bed and can bend both at the knees quite well.  Ten days ago she could not do this, especially the left leg which at that time was burdened with excess fluid and the knee hurt when we moved it for her.  Both issue are gone and it gives us hope that she will make great progress in the coming week with out-of-bed therapy every day for five days.

SATURDAY — fixing what one can

Along with other muscles the tongue and swallowing apparatus degrade with inactivity.  This is apparent with Nancy and I just assumed time would fix the issue.  Not so maybe.  And in the meantime there are things that can be done to make eating and taking pills safer and exercises to bring back the functions.

A speech therapist worked with Nancy yesterday to assess her status and explain to us how this part of her recovery would go.  For example, food that sticks to the inside of your mouth, such as bread or corn, should be avoided.  When taking pills one should tilt the chin down toward the breast bone so as to close off the airway (trachea) to the lungs.  When we swallow a flap, called the epiglottis, moves down over the larynx to keep food out of the windpipe.  For Nancy these parts don’t work as well as they should and so by choosing foods carefully and by being careful she can prevent swallowing and coughing problems.

She is also taking the anticoagulant Coumandin® which interacts with vitamin K which is found in green vegetables among other things, for example blueberries and tuna in oil.   The greener the veggie (usually) the more vitamin K.

So the food she gets needs to be selected to account for these two concerns, swallowing with ease and not messing with the Coumandin®.

Her lunch included a cup of lasagna, a round soft bread stick and a cup of broccoli. One out of three made the grade.  I guess the message didn’t make it from the speech therapist to the kitchen.  Although, we both think something was said about the food service folks not being able to adjust until Monday.  I guess I’ll have to stop and pick up a milkshake on my way tomorrow.  And yesterday the Director brought her orange juice with a high protein addition.  Today they were out of orange juice.

The bathroom door squeaked enough that if someone opened it, it would wake a sleeping person.  Today I forced the pin out with a knife and put a bit of “this ain’t butter” spread on it to cure the noise issue.  We will continue to educate the staff about the food issue.