Monday, December 16, 2013

A Bit of the Details

The last week has been a rough one for Jack.  While honesty has always been my motto, I have to admit, it's difficult to share the details of this part of the journey.  I can easily talk about what is going on with Jack, but writing it down isn't so easy.  You would think that living it every day would make it real enough, but documenting it means I can't take it back, I can't ignore it, I can't see only what I want to believe.  Transitioning Jack to hospice came with the realization that Jack is going to die someday.  But, someday was just a day out there, somewhere off in the distance - a day I didn't want to focus on.

Someday is getting a little closer to home.

While pain is always an issue, we've been able to stay on top of it for the most part. He still has break through pain on occasion and it takes quite the arsenal of morphine and ativan to get him comfortable.  The more concerning issue is Jack's heart rate.  It's all over the board and has been much higher than normal, even when he's sleeping and presumably not in pain.  The other change is that Jack is sleeping a whole lot more.  I still struggle with getting out of the mindset of wanting to know what is wrong and how do we fix it.  There simply is no fixing what is going on with Jack.  

After reaching my mental breaking point because I couldn't let go of needing some information, some answers as to what is going on with Jack, I sent a text to Jack's St. Louis neurologist this evening.  She immediately called me and we talked for over an hour.  She is such an incredible source of comfort for me.  She totally calms me down because I trust her.  She knows more about Jack's disease and how it affects him than anyone else.  She reminded me that our focus for Jack is comfort care.  There's a lot we do every day as part of Jack's routine - that has been part of his routine for years, that needs to stop because it's just too hard on him.  As to why the changes we are seeing in Jack, most likely, he's in heart failure.  We knew his heart function had decreased significantly after he saw the St. Louis cardiologist last year.  Given the higher baseline heart rate and the increased sleeping, it appears to be getting worse.  That's part of his disease process.  

According to Jack's neurologist, someday could be tonight, it could be tomorrow or it could be months down the road.  But, it's no longer out there, out of sight or out of mind.  It's beyond difficult to live with such uncertainty.  Do I stay home, do I go to work, do I sit in Jack's room with him 24/7 just in case?  What if he dies when I'm not with him?

What I love about Jack's neurologist more than anything is that she doesn't limit her conversation to just medical information.  We know each other well enough to talk about God and heaven and how Jack will be okay no matter what.  And he will be. 

So, my friends, that's where we are right now.  This is hard. Really hard. But, as my beautiful friends - Jenny, Christy and Sarah (who are likewise facing very difficult medical challenges with their own children) know all too well, 


(even if we don't want to!)



Susan said...

Oh Ann, I think it should be a rule that every parent outlive their children. I'm sure it is so difficult to leave Jack's side with this uncertainty. You must though. Try to have faith that it will work out the way it is meant to. Though Jack's time on earth may not be as long as we would like, he has been well loved, affected many people in a positive way, and will be missed when it is his time to go. That's really what we all want. XOXO. You've been in my thoughts a lot.

Christy said...

Oh Ann. I hate that it has to be this way for you, Jack and the rest of your family. Heart failure is no joke, and it's torture for parents to watch their kids go through it. So. Not. Right. But, I love what your doc said, that Jack will be okay no matter what. That's something I'm going to hold on to - for Jack, you and for Harlie and myself.

And I second what Susan said, Jack has been well loved and has affected many other people in a very positive way. Not everyone can say that. Big hugs to you all.

Love you!
Christy xo

Sarah said...

My dearest Ann...such a difficult blow to accept. And the uncertainty just leaves your mind spinning through all the scenarios of when and how it will happen. And none of those scenarios are positive. The biggest prayers we can say now are for peace for Jack, and an ideal situation where he is surrounded by those who love him when the time comes. We all feel so connected. My heart aches for the pain you feel. Love you always friend!!

Anonymous said...

My Dear Sister,,, Thank you for teaching us strenghth! Mom is sitting there next to Jack and you, Mark, Hilary, Mary and Eric. When the time comes he will be in loving arms! Love Cecelia
I bekive we have at least one more Christmas with this amazing Young man!

dana said...

No word's just continued prayers for u both!

Monica Carter said...

Know that love and prayers for you Ann, for Jack and for the whole family are being sent.
Keeping you all in my heart.

Truth Ferret said...

Ann, I know we haven't met, but we were where you are just a couple of weeks ago. Monday of Thanksgiving week, we didn't know if Stephen was having a rally or a comeback. In our hearts, we knew that it wasn't a comeback, but we never gave up hope. Hospice of South Texas had been taking of us for over a year, but that week, forces were gathered with one goal in mind: Fight the pain and let Stephen go. He didn't want to leave (No four year old is ready to leave love.) I do understand in a different capacity, because Stephen is my baby's baby. You're a mom and your heart is breaking. I wish that we could make all this pain go away, but it's like waves of darkness. Hold on tight to those who love you and know that your heart will keep Jack forever. (Words fail me, and I hope that I've not made your pain worse.) Warmly, Bonnie, forever Stephen's Nana.