Monday, April 20, 2015

My Diary

I love a good pen, one that feels solid in your hand and writes smoothly.  My kids gave me a new fountain pen and journal for my birthday and I have been busy updating some scribbled notes which show the arc of our history over the last ten years.

Since we came home from the second stroke I have documented in my own patented sloppy manner all of the trips we have made to the hospital since 2007.  The pattern has definitely changed for the better, for a lot of reasons. 

When we came home after the first stroke in June of 2005 we went to a number of doctor appointments but only returned to the hospital one time, in July, to get Marty’s bone plate in her skull replaced.  I say that so easily now, it was a real struggle at the time.

When we came home in June of 2006 after the 2nd stroke we were in the emergency room that same month fighting off what become an endless series of infections.  Marty was admitted to the hospital three times between June and December of 2006.  

I wasn’t sure I was ever going to be able to be the kind of care giver I wanted to be or the kind of care giver Marty needed. I was ready to give up because the medical issues were overwhelming.  It wasn’t just being in the hospital, it was the worrying about getting to the hospital, it was worrying about when to go to the hospital.  I was not qualified to make those kinds of decisions.

In 2007 things got a little better.  We went almost a whole year without being at Providence Hospital and then the fall hit and respiratory infections hit hard, we were there once in September and twice in October.  This is when Great and Wise recruited a younger prettier Great and Wise pulmonologist to help with respiratory issues.  We got a vibrating vest, a better understanding of respiratory hygiene and some new meds.  We went eight months before we went back again.

The following year, 2008, we went back in the hospital three times, clustered in the summer for urinary tract infections and the regular fall visit for an upper respiratory thing, it was about here a genius respiratory therapist recommended we start using a BiPap machine, similar to a CPAP to help Marty breathe better at night, it helped.

2009 was a seminal kind of hospitalization, this was one where Marty got really, really sick with an upper respiratory thing that developed into pneumonia.  I thought I was going to lose her on the night we first took her to the ER, she was weak, was having a hard time breathing and her blood pressure was very low.  I think this one got Great and Wise too as he asked that fatal question, what are her wishes.

From this episode I learned how to deep suction and things changed for the better.  It is an invasive procedure; it is uncomfortable to the extreme for Marty but being able to clear her lungs has been maybe the single biggest improvement we have made.  We didn’t see the inside of the hospital again until the end of February 2010. 

The visit in February of 2010 seemed simple but rapidly became complicated.  It was initially a UTI then an upper respiratory thing, then Marty had a major seizure that was so violent she broke her right arm as she lay in bed.  Marty was in the hospital for almost three weeks that time and we came home physically and emotionally wounded, her strong right arm was no longer strong and we had to decide how to proceed with recovery.

We got through it, made some changes, started treating osteoporosis, and stayed out of the hospital until November of 2012 and that wasn’t your basic infection admission, she got a stomach virus and was severely dehydrated.  We didn’t have to stay long.  We had been hospital free from March of 2010 until November of 2012, a long respite.

In 2013 we had a bad run of urinary tract infections.  UTI’s make you really sick and frankly they are hard to diagnose for Marty.  We went to the hospital in February and went back again in June.  She was really sick in June, really sick.

We watched the 2014 Super Bowl in the hospital with another UTI.  After recovery we took a different approach.  Great and Wise started Marty on a prophylactic antibiotic and we got a home health nurse to come out on a regular basis to get a clean urine sample to test.  Marty has had some UTI’s since then but we have caught them before she got really sick or septic.  Yeah us.

We have not darkened the doors of Providence for over a year.  We haven’t even been to see Great and Wise that many times.  The unpleasant task of deep suctioning, the daily antibiotics and the home health nurse have moved us to another part of our journey.  We are maintaining.

That doesn’t mean I don’t worry or fret or occasionally make a trip to see Great and Wise unannounced.  We have been to the ER for a diagnosis but we haven’t been admitted.  

Frankly, we haven’t been admitted because I worry and fret and because Marty is a good patient and accepts we are going to do some unpleasant stuff to keep her well.  It’s working.

All of this is to say, I kept records, as you can see, not particularly meticulous records, but records none the less.  It’s a poor excuse for a diary but it does show where we have been and more importantly how far we have come.

We still have miles to go.

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