A Place Called Normal

So I've been home now for 3 weeks.  This experience should be comfortably behind me, a part of my past.  Why, then, do I find that I am still caught in the complex web of healthcare?

Well, for one thing I still have a hole in my throat with a tube (trache) sticking through it.  Every morning I am reminded that I have to clean around the tube, change the dressing, and put in a new inner lining  in the tube.  I have to cap off the tube to prevent water coming in while showering and cap it with a different cap in order to speak without plugging the ceiling hole.  I worry that the stiff tube will take on water somehow and I could become waterlogged.

Another insult to my body is the G-tube sticking out of my stomach.  Just like the trache, this bummer tube reminds me that this is my third try to get it right trying to swallow.  If I begin to have breathing problems again, I will need to receive nourishment by g-tube or n-g tube.  Since I have already removed two G-tubes and more than 1 nasal gastro tube, my personal care physician is reluctant to remove this current structure.

My diet, while recently expanded to include almost everything I care to eat, is still restricted.  I'm to eat mostly soft foods and food with uniform consistency which makes it is easier to swallow.  Of course in addition to the precautions I take when I shower I have to watch how I change my clothes that I don't mess up the wounds.  Swimming is out of the question.

And how long does this all last?  Could be days, weeks, years.  The double hospitalization makes everyone a bit nervous.  If Dr. A says it should be okay to pull everything out and call me cured, and things go bad again, Dr. A will feel a personal loss of status.  One or two doctors have used "end of the month" in their reports making me think that was a sort of "out of the air" projection made in one of their case management meetings.  Whatever the magic date is, I don't have much of a choice but to wait and do all my exercises 

Follow-through

There used to be a time when patients bounced back and forth from home to hospital or from home to hospital.  Sometimes it got so bad that patients who needed almost no care were occupying some of the most expensive hospital beds.  Home health care (HHC) done right can solve 90% of those problems.
For us, HHC seemed like just piece of a complicated system  - excellent in its own environment and totally cooperative in the big picture.

To begin with, they were involved early on with my case from an early notification from the hospital.  Plans were developed during my stay so there were no last minute surprises or crises.  Supplies were ordered, shipped, and even inventories.  In fact a training at the home was possible using 100% of our own product.  A charge nurse coordinated all the units that we dealt with.  She was blown over by Carolyn's organization with regard to meeting all the caregiver's challenge.  Because of personal schedules, this charge position was shared by two nurses.  Saying we were the "best" patient/caregiver she had seen in her 32 year career, the case was closed.  We had successfully transitioned.

Our next visitor from HHC was thw Physical Therapist..  An experienced therapist brought a person whom she introduced as her replaeement.  She would be retiring soon.  This older therapist was well qualified but, seeing that Carolyn had put things together well, decided to start micro-managing.  I was battling with my inner self  not to smack her with some of her suggestions.  Then my aide said something that rang a bell with the PT and she immediately changed gears.  From the "ongoing assistance" mode, she shifted to the "advise and close" mode.  She wrote up her observations along with one or two suggestions and told us she was closing her part of the case unless we had reason to insist she come more often. We didn't.

Like the PT, the Speech Therapist found things so well organized that they moved immediately into recommend and close mode.  I had difficulty focusing on their recommendations after they shared with us the results of my Modified Barium Swallow test.  If I couldn't improve my score on that physical test I would probably never be able to eat another normal meal.  I did pay close attention to some swallowing exercises they shared with us.

Going one better than the visitors who came only once was the Nutritionist who held a telep;hone consultation.  She asked her pertinent questions, answered ours, our and gave us referral numbers if something new came up.  She also gave us permission to skip our 3:00 am feeding.

All in all a good professional team who accomplished their mission then left us alone.

Hard to swallow

Darwin would have called it a tribute to evolutionism but scientists today describe it more as precarious.  Humans amoung many animals have a single intake opening for both our respiratory tract (trachea, lungs, breathing) and digestive tract (esophagus, stomach, intestine, eating).  Neither is more important than the other since we need both air and food.  So how do we decide what goes where?  In some cases we can decide.  For example, we can intentionally swallow air to prepare for a burp.  Or we can drink so sloppily that we get some liquid heading toward the lungs.  That could start around of terrible coughing or it could kill you. But most of the time you don't even think about it.

So who is in charge of this trick of directing esophageal traffic like a Parisian traffic monitor?  And, more importantly, what do you do when he falls down on the job?  Because that is what they're saying is my problem.  I'm a sloppy swallower.

The traffic cop is the team comprised by the tongue, pharynx, and epiglottis.  The nicer, more accurate term for sloppy swallowing is silent aspiration.  The serious part is a potential death sentence the other half a mere inconvenience.  Because of this problem I have been hospitalized twice this year for a total of 20 days in the Intensive Care Unit or the Step-Down ICU. Because of this I have two artificial openings in my body - a throat tube known as a trache and a stomach tube known as a G-tube.  In case I need air/oxygen immediately a tube delivering that can be inserted through my trache and into my lungs.   With my mouth preoccupied with oxygen, I can be nourished by sending liquid food through the g-tube. With the safety measures in place I can exercise and/or allow surgery to strengthen the little traffic copy and improve his performance.

The short term hope is that I can get my little traffic cop to work well enough that I can eat regular food with other people.  The long term hope is that a cure for Parkinsons Disease will keep the little guy working well past retirement age.

Discharge Plans

When the Discharge Planner showed up in my hospital room 4 or  days into my stay, I acted bemused but in reality I was impressed.  Bemused because it seemed like everyone else on the staff acted as if they expected me to spend my whole life in the hospital and I should stop entertaining thoughts of going home.  Impressed because I knew how far the healthcare industry had come.

Back in the 1970's when I was helping to run a 300 bed hospital, we had one person spending half her time trying to keep track of Medicare patients.  She was supposed to do "discharge planning" which at that time meant "finding a place that will take the patient when we can't do anything for them".  And that meant ANY place she could find and arm twist into taking the patient.

Now in my case the DP had investigated several choices and had considered my needs and resources.  The recommendation was originally for a nursing home so that I could have 24 hour/day nursing care available.  I "needed" around-the-clock feeding, supervision and medication.  Carolyn, knowing how much I would look forward to a nursing home stay, hustled around for two home health aides to provide the daytime supervision I needed when she was at work.

That made the DP's job easier but it didn't slow her down a bit.  At this point she shifted into "supply and equipment" mode.  Since my discharge plan required that I be tube fed through a G-tube she made sure that a month's supply of "tube food" was at our house and a smaller supply to take home.  She arranged for the appropriate healthcare staff set up appointments to train our home health aides and members of my family in maintaining our lawn AND me.

Right up until I rolled from my hospital bed onto the ambulance gurney, my Discharge Planner was calling and meeting with people involved in my transition care.  She made the often troublesome change look like a well-oiled machine leaving me to watch the discharge process.