Monday, September 02, 2013

The "H" Word

Picking up where I left off a couple of posts ago ...

After two nights and two days of almost no sleep because of pain we could not get a handle on, we took Jack down to the emergency department at 4:30am Wednesday morning. After spending most of the day in the emergency department and having a thorough work-up of tests, there was nothing they found that pointed to any specific thing that would be the source of Jack's extreme pain.  Mark and I decided that we weren’t going to admit Jack and go on a fishing expedition to try and find what could be causing the pain.  If the source wasn't obvious, we weren't going to put him through a bunch of invasive tests that may or may not give us any useful information.  This decision was based on all that Jack had been through the last year and a half and what had already been done as far as surgeries and procedures.  

The decision was made to transition Jack to hospice.  Hospice is a scary word, I know that.  I've been avoiding the word ever since we transitioned Jack to palliative care. But, it’s important to understand (as I’m trying to understand) that hospice does not only deal with end of life care, it also provides comfort care. It is possible to be discharged from hospice. Jack may or may not come through whatever issue is causing him the pain.  But, by being on hospice, we can make sure Jack gets the pain control he needs without visits to the emergency department and without hospital admissions. To be clear, we are not precluded from pursuing further testing if we change our minds down the road. 

At the moment, Jack is getting morphine round the clock and, as of today, he is significantly better than he was just two days ago now that we have the pain controlled. He is awake and alert, but certainly not his usual self. I really hate not knowing what is going on. It’s beyond my understanding why the doctors can’t readily find the source of the pain.  But, I’m fortunate to have the support of a trio of doctors who are also my friends – Jack’s St. Louis neurologist, a PICU intensivist and the founder of Cure CMD.  All exceptionally bright people who know more than anyone else about Jack’s disease and who, most importantly – know and truly care about Jack and me.  They assure me that the tests that have been run would find the source of Jack’s pain if it was something that could be easily found and treated. I trust these people implicitly and I will continue to consult with them as things progress. 

I thought long and hard before sharing this information.  However, I’ve always been honest in sharing this journey, so I can’t stop now just because the topic is an uncomfortable one.  I can say that today things don’t seem as dire as they did a few days ago. But, I really haven’t a clue where this is heading. 

That's the update my friends.



P.S. For the second year in a row, I was unable to participate in the Disney half because of Jack issues.  I think Jack has a problem with me going to Disneyland without him!


Dana said...

((Hugs)) Your so good for Jack!

Sarah said...

I completely appreciate your courage in sharing this new part of your journey. It continues to show that no matter what the transition is, or how uncomfortable it is to discuss, Jack's needs are always met. I know this isn't the direction you wanted things to go for Jack, and I know it's difficult not knowing the source of his pain, but you are keeping his needs at the forefront. Deciding not to pursue more testing for the sake of his comfort is the best thing you can do for him right now. Loves and hugs as always!

Anonymous said...

i think of jack often. his eyes speak of the amazing spirit he has, and your words speak of the amazing bond, the love, you both share. he's very fortunate to have such an incredible advocate for a mom.

although difficult, your decision is one that beneifts jack. i'm glad the increased morphine is helping him.
hugs all around!

Ann said...

Thank you Dana, Sarah and Anonymous. xo

Anonymous said...

just yet MORE proof of your great and unselfish love for Jack.

Jen said...

Hi Ann ~

I haven't been reading too long, but long enough to know your unending, fierce, fighting, love for Jack. It is so obvious to see you always keep Jack's comfort and well being as your top priority.

I truly appreciate every honest, straight forward word about your journey. I imagine at times it's not easy.

Our daughter was in an accident at just about 3 years of age and we always knew if she didn't have a quality life - we would let her go.

In all our time in and through the hospital, everyone knew our wishes, yet I had never once heard the term, "Palliative Care." I thankfully researched and found them not too long ago. I am so grateful for them, and their continual support.

As I've read each new post, I've been thinking of you, your family, and Jack.

Please know, I will continue to keep you close in thought and send all the love I can your way.

Ann said...

Thank you so much Jen. xo

Anonymous said...

Jack and you have touched my heart at the deepest levels. I have seen your love for him in action...and in he looks to you. While none of us can understand your journey, your honesty and reflection have taught us all. Thank you for being an advocate to Jack, for your vulnerability, but most importantly, your strength. You are both angels in my eyes.

Ann said...

That you for your kind words whoever you are who wrote the last comment. xo

Jennifer said...

Thank you for writing this blog. I am in awe, and very grateful that you are able to document this journey of yours, and Jack's. And the rest of your family. That letter that you wrote (previous entry) should be published, and passed around to all docs treating patients that are not able to communicate with words. With your permission, I would like to print it off and keep a copy in my wallet for future hospital visits. I am praying that hospice will be a blessing to Jack, and your family. They really are there for other things, other than end of life care, and thank you for sharing that. I also love that you sleep with him, and look into his eyes to find the source of pain...beautiful to say the least. Thank you again, for documenting this journey for all of us. May God bless you, and your family with peace. Hugs to you.

Ann said...

Thank you Jennifer and yes, please feel free to share my "Dear Attending" post. xo