Loss

What a week...full of loss and mistakes on many different levels.  This week has left me with a heavy heart and a questioning soul. 

First, a quick health update.  I am feeling really well.  Last year I participated in a clinical trial for the COPD drug, Spireva.  I was on the drug for 10 months.  In December I was called by my research coordinator asking if I could come back to participate in another little study related to the first one.  There were two arms of the initial Spireva study...one for people with CF and one for people with COPD.  It turns out that several participants in the COPD arm of the study died of heart-related issues.  Therefore, they wanted to bring several people back to go back on the drug for one more month, while monitoring the heart with EKG's at several intervals during the month.  I spent part of my Monday at my CF center having repeated EKG's.  I have a really low heart rate...always have and always will.  However, it was even lower than normal.  We didn't get a reading above 42 beats per minute on Monday.  In an effort to not hurt my hearts feelings I choose to call it "highly efficient" instead of "slow". 

I'm still trucking along with my 4 antibiotics.  I'm still not seeing a great deal of side effects.  I still HATE doing my nebulizer treatments twice a day.  I'm still thankful beyond words that my health is stable!

On to the biggest mistake of the week.  After years of begging, I finally gave in and got my kids a dog.  If you read my previous post, you know that my kids have horrible lungs, asthma and allergies.  However, I did my research.  I looked for dogs that were the most hypoallergenic, we visited the puppy twice before we took her home to ensure that the allergies wouldn't be an issue and we took the dog with the caveat that this was a trial to see if our lungs agreed with this pup.  We had the puppy, the most adorable yorkipoo ever, for a total of 24 hours.  My eyes burned the entire time we had her, but more worrisome was that my son...whose health we just got stabilized a few weeks ago...started having asthma symptoms again within hours of bringing the dog home.  I made the decision to give the dog back swiftly and she was back where we got her within hours.  BUT not without tears.  My son didn't seem to care much, but giving up the dog was equivalent to ripping my daughters heart out.  She cried for hours on end.  ***SOBBED***  This made my heart break.  All I wanted to do was make my kiddos happy and I ended up making one sick and the other sad.  This was a HUGE mommy-fail on my part.  I should have never even gone through with the doggy trial.  I'm left kicking myself and second-guessing my parenting choice in this instance.  Emma is better and seems to understand why we couldn't keep the puppy, but my son is still not well.  I had to start another prednisone burst.  Why, Stacey, Why?!?!

Let's move on to Thursday.  I got a call from my mother that the end was near for my grandfather.  This is the only grandfather I have ever know.  My maternal and paternal grandfather's both passed away before I was born.  My grandmother got remarried to Merv at least 25 years ago.  My memories of my Grandmother all include memories of Merv.   Merv has had a long life of over 91 years.  He has been deteriorating over the past few months.  On Thursday he was rushed to the ER due to his inability to keep his blood-pressure up.  I took off an afternoon of work and went to sit with him.  I held his hand and told him that it was okay to let go.  I reassured him that we would always take good care of Grandma.  I listened to his stories...some of which made sense.  Apparently, "they" are writing a story on the ceiling that he has been reading.  It's kept him entertained the last several days.  I honestly think this is lovely...that when his mind is deteriorating it's causing his to see stories on the ceiling.  Merv is an author.  He has written a few books, including "We Had a Shore Fast Line".  Reading and writing have always been his thing.  I am so glad they can still be his thing as his life winds down. 

So I said my good-byes and Merv was moved to the ICU.  It was determined in the ER that his white blood cell count was very high, so he had an infection of unknown etiology.  He was started on IV Zosyn before I left.  However, the prognosis isn't good.  Both he and we want no extraordinary measures.  It was explained to us that antibiotics are not considered an extraordinary measure.  They are treating him, but there is still not much hope for recovery.  It is very sad to see a person get to this point in life...where there is nothing left.  I get peace in the fact that he is feeling no pain.  So basically we are preparing for a loss to come, probably within the next few days.

I got a call from my mother last night telling me not to visit Merv in the hospital anymore.  Apparently, the raging infection is c diff.  CRAP!  If you know my story you know that I have been hospitalized for c diff.  That particular infection is not my friend.  It's evil!  Once you've had it, you are much more susceptible to getting it again.  They are now requiring visitors to mask, gown and glove before entering Merv's room.  CRAP!  I kissed him when I arrived and I held his hand with my ungloved hand for an hour.   I don't regret doing these things...I would do it all again, but I should have not been so lax in protecting myself.  I should have masked, gloved or maybe even scrubbed.  I did none of these things.  So, we will wait and see what happens.  Last time I got c diff the symptoms came on about a week after exposure.  Now, we wait...  CRAP!

Finally, just today one of my CF friends took her final breaths.  Kristi was a beautiful friend.  She frequently checked in on me, even though her health was so much worse off than mine.  She was a kind soul.  She was friendly to everyone.  She was waiting for a new set of lungs.  She didn't make it long enough to receive those lungs.  Kristi and I talked about meeting one day when she was in Cleveland, since she was going to get her transplant at the Cleveland Clinic.  That never happened.  Kristi was 29 years old...  My heart is heavy after hearing of this loss.

This week has been full of praying for guidance, praying for comfort, praying for healing...praying...praying...and praying some more.