Monday, January 6, 2014

My 500 Words: Day 6 - The Hardest Day


There are days or moments in your life which are so profound that they leave an imprint on your life for all time.  That memory can be something wonderfully exciting - a wedding, a proposal, the birth of a child.  It can also be something terribly tragic - like remembering where you were on 9/11.  Whether it was good or bad, that moment left its mark.  It's something you will never forget.

One of these moments for me came on May 1, 2013.  It was day 37 of my 6 year old daughter Peyton's hospital stay.  She was so very sick.  She was suffering from brittle bones, having multiple fractures.  She was having terrible issues with swelling in one leg.  She was in pain.  Her body wasn't absorbing nutrition.  Her bloodwork was all out of whack.  She was on all kinds of medication and treatments.  Yet at 37 days in, we were no closer to a cure for whatever unknown illness was going on than we were at any point up to then.  Her medical team was doing everything in their power, including enlisting the help of a doctor we'd seen at another top children's hospital.  Nothing was working but I can assure you it was not for lack of trying.

I spent every single day and night by Peyton's bedside while she was in the hospital - just as I always had.  It didn't matter that we were now on day 37.  I wasn't leaving her.  We'd had a couple close calls and I wasn't about to leave her side.  As the events unfolded over the days and weeks, we were at a point of needing to make some very weighty decisions.  If you are thinking that I am about to say it was the decision of whether or not to resuscitate her in the event of emergency, you'd be wrong.  That decision was made long before day 37 of her hospital stay.  In fact, that decision had been made many many months before.  We had a general idea of what we wanted long before she became that sick because we knew that her health was so precarious that anything could happen at any time and we'd need to make decisions in an instant.  Far better to have a plan already in place.  In fact, by day 37, as new residents and doctors came on to her team as others rotated off, we'd sit down and have that discussion over again just so everyone was clear.  The plan was in place but there was one night where she had some respiratory issues during the night while I was asleep on the sofa in her room.  I woke up to the sound of nurses and a doctor taking care of her and then coming to me to ask me what I wanted done.  We hadn't discussed that specific issue when we'd formulated the DNR plan, so once we got past that, we did sit down and go over specific issues that could come up and decided more specifically what we would want to have happen in those situations.  But as I said, if that's where you thought I was heading with this decision, you were wrong.

On day 37 of Peyton's hospital stay, we had a family conference with the primaries on Peyton's medical team.  Several doctors were present - from general pediatrics to PICU doctors, her primary nurse in the unit she was in, a representative from hospice, and so on.  The point of this meeting was to discuss where things stood and where we should go from there.  We were at a point where we were going around in circles in terms of treatment.  Treatments weren't working.  Peyton was getting worse.  Then there were the nutritional and malabsorption issues she was having.  What started as an admission with a new fracture due to her brittle bones {note, she did not have brittle bone disease - we still do not know what her underlying condition truly was} snowballed into a mess of respiratory and GI issues.

At 37 days of a hospital stay that was not going to end anytime soon, we were faced with the decision that no parent should ever have to make.  Do we or do we not continue treatment.  If you weren't a part of her life 24/7 or didn't know her or our situation, there's simply no way that you can possibly know how we made our decisions and how painfully difficult it was.  I know that there is no doubt in our minds that we made the right decision for Peyton.  It is exceptionally painful to sit in a room hearing from a team of medical staff who has become, in a sense, an extension of your family tell you their thoughts and professional opinions on the gravity of the situation.  We knew going in to the meeting the decision we needed to make, but we also needed to hear from everyone and know that we were making the right choice.  I have been assured by various doctors that there is not one among them who would ever look down on us or think poorly of us for the choices we made that day.  Not one.  In fact, we were praised for all we had done and for the strength and courage we had shown leading up to this moment.

On day 38, before anything had been put into effect which would actually change or eliminate various treatments, Peyton's health declined so significantly overnight that it suggested to us that we had indeed made the right decision.  She passed away at 6:12am on day 40.

It is a very sad memory to have, yet it is one of the most profound moments in my life.  May 1st - the day we made the hardest decision of our life.  May 1st - the day we truly let go and completely handed her care over to the Lord for His will to be done.

{if you're counting - that was 999 words for my sixth My 500 Words post, for a total of 5,099 this month!}
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