Derailed (Again)

I can’t believe that I almost did it:  I almost released a petty, self-serving, pity-party post that would have revealed how impossibly human I really am.  Then one brief talk with a nurse changed everything.  First, a little background:

I love Christmas.  I love the feelings of comfort and goodwill that accompanies The Most Wonderful Time of the Year. And my friend and next-door neighbor is the same way.  The difference between our experiences is that she has an extremely energetic, kind husband who is willing to do all kinds of light-hanging, decoration building projects that has her sitting by her fireside cozily sipping her hot chocolate while watching Christmas movies by December 1.

I, on the other hand, have a husband who is just as kind and would love to help me with all my Christmas dreams, but:  he is battling issues that most of us take for granted.  Oxygen:  he needs supplemental oxygen 24/7. That is, all the time.  While we grab our keys and dash out the door, he has to get his portable concentrator, and remember to turn off “Big Blue”, our home-use oxygen concentrator.  He has to constantly fight with the hoses, and lug around a 10 pound piece of equipment.  Just to breathe.  He has to take a long list of medications, just to function. He has to watch his diet carefully or he will have to get IV Lasix, requiring a hospital stay.  He has to take daily injections to properly thin his blood.  Just to stay alive.

Now, I am a ‘do it in a weekend’ type of Christmas decorator, and I usually shoot for the weekend after Thanksgiving, or the following weekend. I have a time frame for enjoying all my hard work, and if I start early, I can avoid having my decorations up until February.  Four to five weeks is my ideal.  The last three years have seen my best laid plans going up in smoke, and I should not be surprised…it’s been like that for nearly everything.

The last three….count them:  three, years my husband has had some type of medical crisis that has put him in the hospital in late November or early December.  Not little, easily resolvable incidents, but major crises.  Each time they have yanked the rug out from under us.  Again.  You would think that we’d be ready for the next surprise, but, alas, we are either very optimistic or complete knuckleheads.

This year was twice the experience.  We attended his doctor’s appointment at the heart transplant clinic in mid-November ready to discuss what can be done to improve his heart function.  They wound up admitting him due to his congestive heart failure and he was a patient for 8 days, until being released the day before Thanksgiving.

Thanksgiving day found us traveling to my dad’s house for a wonderful dinner:  my Bonus Mom, Betty, had even made him a low-sodium dressing that was just as delicious as the regular version.  I am not kidding.

The day after Thanksgiving we made preparations to enjoy a family weekend celebration at a local resort town.  I looked forward to spending a couple of days browsing in the little shops, attending the flea market and viewing the Christmas parade to kick off the Holidays.  After our hospital stay, I felt we could use a little down-time.

The weekend was perfect:  delicious food and lots of family fun in a beautiful setting…it could not get any better than this.  My husband was still recovering from his hospital stay, so he rested quite a bit during the weekend.  It was sometime during this time that he began complaining of a headache.  It was a dull headache, something that seemed more of an irritant than anything else.  Because his pain management plan is very strict, he took one pain tablet.  It did not help.  I kept a cold washcloth on his forehead.  No relief.  At one point I did worry that it was not getting better, and I told him that if it were not better by Monday, we would go to the doctor.

As is usually the case, the symptoms controlled everything:  at around 3:30 on that Sunday morning, the day we were set to leave, I awoke to the feeling of my husband toppling over onto me.  I thought he had just leaned on my arm so I could pat his head.  When he didn’t respond to my questions, I turned on the lamp and found him in the middle of a seizure.

He had never had a seizure before, but I knew instantly what it was.  I ran downstairs for help.  My sister-in-law called 911 while my brother came upstairs to help me.   In what seemed like forever, the paramedics arrived, and began their work.

At hospital number one, a ct scan revealed 3 subdural hematomas.  The doctor began to discuss airlifting him to another hospital, since they did not have a Neurology department.  When he found out we lived far away, he said he would recommend for the one closest to our home.  After an evaluation at the second hospital, they felt comfortable enough to release him to his regular doctors at our local hospital, and so he was loaded into another ambulance, for the final leg of his journey.

For someone on blood thinners, a bleed is very dangerous.  Especially somewhere that is not easily accessible, such as the brain.  He had three of them.   He was in a very precarious position.  They had to take steps immediately to slow down the effects of his blood thinners.  For the next several days, he had regular EEG’s and CT Scans.  Each day they reported seizure activity, while there was no change in the size of the hematomas.

Just as we settled into the watch and wait mode, on the 5th day, he went into respiratory distress, and was put on a ventilator.  For 10 days he was breathing with the help of a machine, and his post-ventilator tests have been positive.  The latest EEG’s have shown no seizure activity, and his hematomas have begun to shrink.  It seems that this walk on our tightrope has been a success.  He will need physical therapy to re-learn use of the left side of his body, plus I don’t know what else.

I will confess:  I am weary beyond belief.  What is supposed to be ‘The Most Wonderful Time of the Year’ is filled with fear and just a little bit of jealousy.  I would love to spend just a little bit of carefree time preparing for Christmas.  I know now that we WILL celebrate.  Up until last week I was not so sure.  It’s hard to describe the feeling of just going through the motions, staying for hours at the bedside of your loved one, the uncertainty.  All around you are the sounds of Christmas music, the festive decorations, the trees, the poinsettias.  It does nothing to ease your despair.

And here is the part where the pity was about to take over.  This morning I decided to stay home, to hang a few measly decorations, for the first time this season.   Just as I was muttering to myself about how this stinks, really stinks…..I called to speak to his nurse, to ask about his morning.  He had just finished taking a walk.  A WALK!!  He had help, and the use of a walker, but:  yesterday the man was on a ventilator and today he is WALKING!!

Just when I was about to describe how I have been denied the happiness of relishing the Season…for the third year in a row, I was reminded about how strong the human spirit is.  How hard he is trying.  For us, for himself, for everyone who loves us.  So it really is not about me and our ridiculously compressed season of preparation.  It’s about the people you share it with.

I guess next year, if I want a relaxing preparation for Christmas, I will start in July.  Christmas in July…who knew?



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