Note to self: Let It Be

I have been fighting with myself, lately.  Having a day of being OK with the prospect of still being in-patient.  Having a day of being frustrated with STILL being in-patient.  I’ve been trying to make myself decide which state of being we are going to be in.  Last night (Sunday) was pretty rough.  It was one of those nights where I was making care decisions for Gregory and I was not present.  He was waking up every 15-20 minutes.  Really restless sleep in between.  The last 10 days or so have started to catch up.  We’ve been playing this nightly game of making sure he is comfortable and can sleep.  I’ve been hesitant with his meds.  My thoughts have been, how can we know he is still showing symptoms if they are masked by medication.  ‘Cause his symptoms are the only thing keeping us here. 

Last night he had two Morphine bolus’.  When I met with the team, this morning, they asked me how the night was.  I told him Gregory had two bolus’ and could have used a third.  The attending stopped what he was doing, looked right in my eyes and with the greatest sense of care told me “Use them.  Do what you need to keep him comfortable.  That is what is important.”  I’ve been afraid of over medicating him.  The word MORPHINE carries an awful lot of baggage.  

It all of a sudden clicked, today.  I HAVE NO POWER OVER WHEN WE ARE RELEASED.  Gregory will clear this virus, when he clears it.  It is our job to keep him comfortable, well rested and happy.  I had a fantastic conversation with our nigh time PA, too.  I ran into her on the first floor.  She asked how our night was.  I  have a habit of answering honestly.  I won’t sugar coat an answer, just because that’s what I think you want to hear.  I told her it was a rough night and we chatted about his symptoms.  She immediately suggested that we start him on an anti-itch medication schedule that would be dosed every three hours.  That combined with the new Morphine plan will hopefully provide him a night of great rest.  We have upped his PM morphine drip, at the time of a Morphine bolus and an Bennedryl.  Three hours later he gets a different anti-itch medication.  Hydroxyzine.  He seems to be doing well so far, tonight. 

We have started to do counts only three days a week.  Cool, huh!  After all, if we were out-patient our frequency would probably be only twice a week.  They are still drawing blood to monitor kidney function, CMV, Magnesium, Calcium, liver function and his Tacrolimus levels.  I also spoke with our nurse today and she was suprised that we were no longer having weekly x-rays.  Their confidence in his over-all health is high.  Guess what else?  TOMORROW IS OUR LAST DOSE OF FOSCARNET!  He has done outstanding on it.  His kidneys have been very happy. 

Tonight we took our tule around the hospital around 7:00pm.  It was quiet enough in the halls that I suggested he ride his tricycle.  He hopped on his trike, secured his helmet and we were off.  Our departure coincided with the end of a Hem/Onc staff meeting and shift change.  He was cruising around the first floor with such confidence.  Several of the staff that we have gotten to know were either leaving form their meeting or just arriving for their shifts.  The looks on their faces to see him cruising around was priceless.  Seeing him as they do on the floor, but out of the unit was a surprise.  You could see the sudden look of recognition cross their face as they realized who they were seeing.  We ran into one of my favorite night nurses, outside by the hippo.  She was flabbergasted to see how he is during the day.  Several people commented that seeing him running cycling around was a perfect way to end their day.  Man, this kid brings such joy to everyone he touches. 

A few words about me.  Over the years I have tried to “blog” publicly.  Tried different sites.  Different angles.  Nothing has felt quite right.  I only know that this writing that I do means something.  Dont’ know what, yet.  I had heard of salon.com and never spent much time over there.  (crap.  The website is being wonkly.  I’ll have to add links, later.  Resolved and added.)  They have a portion of salon.com called open.salon.com.  It’s for folks like me who like to write and like to be read.  On a whim I created an account.  Eventually I will not be writing strickly about Gregory.  I will need a place that is mine.  Those were the seeds I planted.  I just didn’t expect them to be ready to grow this soon.  I’m not sure how it all works, but my entry from the other day was featured on the home page of opensalon as an editor’s pick.  One of many, mind you, but it was listed quite near the top.  Like the second one.  I’m not a fan of how they tweaked the contents to create a catchy title, but meh.  The greatest part is that there is an option in opensalon to automatically import entries from another website.  So everytime I  post here, it gets cross posted to my open.salon.com.  I now have comments from random people that I have no connection to and a few are following my writing.  You may have noticed that I don’t like to use the word blog.  The word blog, in my mind carries the feeling of a cause to be rallied for or opinions to be shared.  I do not have near enough knowledge or experience to stand on a virtual soap box and tell you what/how to think.  Nor will I rant and rave ABOUT other people.  The only thing I do posses:  I am an expert when it comes to MY experiences.  That is what I want to share.  A little exhibitionistic?  Yeah.  Actually alot.  I like it.   I’ve always wanted to be an Actor or…………. a politician.  A good one.  Pipe dreams again.

Today’s take home?  Let it go.  It’s constantly a battle of knowing how/when to let it go.  Here’s the thing, I may have let it go, but I may decide to grab it again as soon as tomorrow.  If you see me reaching for it, please slap my wrists.  I need a check, too. 

Time to go try the night shift cafeteria.  Fresh omlet, anyone?  ’til later, gotta jet.

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About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
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