A LONG Road

Pre surgery, a good doctor will go over every step of what’s going to happen.  They’ll lay out the statistics on the surgery, give you a prognosis based on your specific condition and they’ll explain, generally with illustrations, what they’re going to do while inside your body.  After the surgery, they’ll let your “people” know how the surgery went, and what to expect in the next few days.

We had this information from my husband’s surgeon.  He gave us the statistics (grim) and the prognosis (guarded).  After surgery, he gave us his report (semi positive).  The anesthesiologist said we still had a long road ahead of us.  What an understatement that was!

Depending on the severity of a surgery, the body must recover not only from the insult of being cut open and sewn back together, but also from the drugs used to sedate during surgery.  Long term bed rest compounds this insult.  And any stay in ICU on a respirator requires even more sedation.  At some point, your body and your mind will say ENOUGH and will try to shut down for recovery.

This is where good nursing is so critical, and where those sitting bedside must be ever vigilant.  Nurses and doctors have great education but they have multiple patients.  You the relative, the caregiver, the one most worried, have ONE patient.  It’s up to YOU to remind them about potential blocked catheters, what certain gestures mean, and in some cases what sort of surgery was performed.  It’s also up to YOU to reach out to the patient, even if they seem to be shutting themselves off from you.  Rub their feet, stroke their hands, and talk about nonsense, just to give them something for their minds to connect to. It never hurts to bring in cookies for the staff.

If you do feel there is a problem with care, speak up.  If Physical Therapy was scheduled for the day before, did it happen?  If the patient is supposed to use breathing implements, has that happened as scheduled whether you’re in the room or not?  Is everything as clean as it should be and if tests are being done, WHAT are the tests, and WHAT were the results.  If you feel no progress is being made, ask why.  You might not like the answers but far better to know than to wonder.

A good hospital will let you know when they feel it’s time to pass the patient on to another facility where they can get different care.  Sometimes the care is more intense, sometimes its just another step along that long long road to recovery.  After severe surgeries, such as the Whipple, there can be a longer than usual stay in the surgical hospital, then more time in a rehab center where the patient gains strength.  Sometimes the move is more lateral, to an acute care facility where more attention can be given to recovery.

All of this sounds kind of clinical and distant – I wanted to get information out without getting too emotional.  The husband wasn’t recovering in his surgical hospital, I did go to the nurse, the case manager, to the floor doctor, and ask WHY???  We all agreed he would do better in what is called LTAC – Long Term Acute Care.  A smaller hospital, where they are aggressive about getting patients well, and have the staff to get the job done.  I also needed a facility where the staff had the time to communicate.

The move was made earlier this month.  It hasn’t been a stroll through the garden, more like climbing a mountain in the rain.  Hauling up over craggy rocks, sliding back from time to time.  We celebrated our 24th anniversary on one of his worst days.  Then the next day his eyes were clear and he was not only answering questions but initiating conversations.  For the first time he was able to see the proof copy of My Killer My Love.  He went into the hospital about the time it was released digitally (May 22) and with the help of a great hospital staff and a lot of work on his part, will be home before it releases in hard copy (September 10).   I’ve found a great buy on some large frames for his next watercolors.  We have a lot of life still to live.