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.

Onward.

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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!