Monday, October 14, 2013

Short Update

An update is in order, but this will be a short one.  I've spent the last two weekends traveling and I'm exhausted. I know -  you don't feel one bit sorry for me.  That's okay.  But, as much as I enjoyed the amazing weekend with my sorority sisters at Coronado Island and the time we spent in New Jersey/NYC celebrating my niece's wedding, my sweet Jack was having a very rough time back home. The stress of being away from him when he is hurting cancels out the fun.  Not that I regret taking the time away.  It's just not as fun and exciting as you might think.

It wasn't that long ago when I could say that Jack was having good days and bad days.  Now, it's more like Jack is having good times and bad times in a given day.  Jack isn't having any "good" days anymore.  We've now added continuous oxygen and Ativan to the mix.  I still struggle with wanting to know why?  The one thing Jack's doctor assured me of when we decided to transition him to hospice was that I could still pursue testing and treatment if I wanted to.  At this point, I need to know why his pain is increasing instead of staying the status quo.  Even if we choose to do nothing once we have the information, I still need information. I'm a detailed oriented, need to know kind of person.  Based on Jack's symptoms, I would like to have some blood work done, at a minimum.  It's possible that we won't know any more than we know right now after doing the tests.  But, I'd at least feel better knowing that we aren't dealing with something obvious and treatable that is causing Jack to be so uncomfortable.  I'm hoping to hear back from Jack's doctor tomorrow.  As much as there are upsides to being on hospice, I'm also discovering that access to certain things is subject to hurdles that I didn't have to deal with in the past. It's very frustrating and makes life more difficult at times.  And the last thing I need is for life to be more difficult right now.

I could go on, but being negative just creates negative energy which saps what little bit of positive (and productive) energy I have left.  At the end of the day, all of the people in Jack's life care about him and want to help.  I'm overly tired, sensitive and emotional.  All we can do is press on.  One day at a time.

I want to share pictures of my very special weekend with my very special friends for those who aren't on Facebook, but I'm too tired tonight.  I'll try and post pictures tomorrow, but in the meantime, here is my favorite picture of the weekend - this pretty much sums it up.


Anonymous said...

I love that pic so much. Wish I could have shoved myself in it too. ;) hugs to you and Jack. Tess

Clara Harmonson said...

One day at a time... You strength and courage is inspiring, and also the way you always put Jack first. You're right maybe it's a good idea to do some testing to make sure that his discomfort is not coming from something "simple", keep us posted when you can. I just wanted to let you know that you and your family are still in my mind and prayers.

Ann said...

Aww, Tess. I wish you could have shoved yourself in there too. We need a trach mom reunion where we take over Coronado Island, eh? Love ya'. xo

Ann said...

Thank you Clara for keeping your heart open to caring so much about others despite your own personal loss and grief. Your courage is equally inspiring. Thank you for reading, for commenting and for keeping us in your prayers.


Susan said...

Blood work sounds like a great plan. I hope you get some of the answers you are seeking. You're in my thoughts. XOXO. P.S. LOVE the idea of taking over the island. ;)

Roberta and Merrill said...

Just praying for Jack and all of his family. Even if we kind of know the path, it does not mean we want to travel it. None of this can be easy or peaceful. I am so sorry.

Christy said...

I really hope you got some answers last week. And that Jack got more relief than pain.

I'm always thinking of you, even when you don't hear from me.

Love ya,
Christy xo