Overload

Days have gone by and I'm not even sure what to write about our experiences.
I guess I'll start with me this time.
I had a few spots on my skin that worried me, so the doctor examined them and pointed out which ones were of concern.  They were all treated and she told me to return in a month to be rechecked.  At the next appointment I was limping because of my sore right foot so I was told to buy new shoes (different style) and come back in two weeks.  I bought some shoes which have helped a little.  Meanwhile I had an attack of pericarditis - first in over 25 years.  By the time of the next doctor's appointment the pain had stopped but it was confirmed as pericarditis.  However they ordered an EKG just to be safe.  I've had those before - no big deal.  Oops.  This one showed some "irregularities" and now they've referred me to a specialist and ordered more tests, starting next week.  (If stress has anything to do with irregularities, then I certainly understand.)
Meanwhile we've dealt with Neal's sore hand, with the picc line dressing that continually itches, with daily IV's, with meds for the blood clots and with wound care.  The wound doesn't like the blood clot medication and has deteriorated, so they stopped the wound vac for ten days to see if that would make a difference.  We'll find out this Friday, but meanwhile the dressing has to be changed every day.  The home nurses come three days a week, and the rest of the time it is my responsibility.  I don't mind because it's less hassle than the wound vac.
We have been waiting and waiting to talk to the heart surgeon about the plan for surgery and how soon that can happen while Neal is on blood-thinners.  Last Friday was our appointment. 
We thought.
When we arrived it was very evident that we were not expected.  After an uncomfortable wait in the reception area, the office manager came out to talk to us.  Basically she said that the surgery was cancelled, and we should have been notified.  Well yes, we had a phone call that surgery was cancelled, but had asked that we be able to keep the appointment in order to have our questions answered.  Apparently "okay" doesn't really mean that.  Plus during the phone call they did not say that Neal was no longer a patient of that surgeon.  What we learned was that the cardiosurgeon has decided that Neal's condition is too "high risk" for him to be a candidate for the minimally invasive surgery.  Really?  Why weren't we told that several weeks ago when the surgeon apparently made that decision?  Or why not tell us any of the times that I called the office?  We heard lots of double talk and assigning of blame.  By this time we were back in the manager's  office and she had made phone calls to the cardiologist's office.  It's in the same complex but several blocks away and in a different tower.  She told us that Neal would be having a different type of non-invasive procedure to repair the aortic valve, and that a nurse from a different surgeon's staff would be down in a few minutes to get acquainted and explain what the new procedure.  The nurse arrived but didn't come immediately to the office where we waited - I saw her head down a different hallway.  Time passed and finally the nurse and the office manager returned together to announce that plans had changed.  Again.  In order for Neal to have this new procedure, he'd have to accepted into a trial study at the UW and that would take 3 or 4 months, which was too long so Neal wouldn't be going there.  The nurse told us instead she had made an appointment for us with Neal's cardiologist, at which time Dr L would discuss a "plan of care" for Neal.  Pardon my language, but what the h_ _ _ does that mean?  I have never felt so frustrated with medical folks as I did then.  Neal's reaction was seething anger and mine was tears.  Neither was effective.  The original surgeon wandered in to say hello and to explain that Neal was too high risk for his specialty.  (What?  Might mess up your batting average, so to speak?)  He started to explain that Neal was going to have this neat technique at the UW, and the nurse and office manager interrupted to tell him that option had been eliminated.  Oh, well, never mind then and he walked out.  Odd.
We headed home, both upset with what had happened.  Neither of us was capable of speaking objectively about what had just happened so we were alone in our thoughts.  Then to add misery to frustration, as we left the freeway and went around a corner, Neal's power chair tipped sideways, the van straps (which hold the chair) locked up and Neal was tilted at an angle and couldn't move.  I pulled over to help, but could not get the straps to release so poor Neal had to ride home in a tilted position.  At home even with a hammer I couldn't release the lock, so Neal had to bend over the side of the chair and whack it loose.  Obviously there's one more project on the fix-it list.
The wound nurse arrived shortly after we got home, and when she checked Neal's vitals his BP was 40 points higher than normal.  No question why, that's for sure.
So we wait.
Neal saw an occupational therapist for his right hand this morning and on Monday he'll see an orthopedic specialist to do further testing.  Also this morning we learned that the picc line has slipped, so there's another concern to handle.
My brother is going on vacation, my daughter and family are leaving for North Dakota tomorrow, and I'm dreaming of escaping to some place where there's sunshine.  This Friday is the first day of our two weeks at the time share in Hawaii, but once again,  it will sit empty because we can't go.  Two weeks of Kauai sounds heavenly!
This has been a post of gloom and frustration, so here's something to end on a very happy note.  This morning my granddaughter was adopted by my son-in-law and now everyone at their home has the same last name.  I'm so pleased - he has been a wonderful daddy to her.  Prayers are answered.