It's A Process

When you are the parent of a technology dependent child, your focus very early in the journey (when you don't have a diagnosis and you still have hope) is to do everything in your power to get rid of the technology.  You get in "wean mode".  I spent the better part of the first three years of Jack's life trying to get him off the ventilator.  The longest he could ever go off the vent was about an eight hour stretch. In retrospect, he should never have been off the vent that long - or at all.  But, being the goal oriented, task master that I was, I wasn't going to cut the poor kid any slack and he gave it his all during those times he was breathing on his own off the vent.  If he could have talked, he no doubt would have told me to give him back the damn vent. If he could have moved, he no doubt would have grabbed the vent circuits and hooked himself back up.

Even after I accepted that Jack wouldn't ever get off the vent,  I still couldn't get out of wean mode. If I couldn't get him off the vent completely, then I was at least going to work on weaning down the amount of support he needed.  He didn't get very far.

When Jack would get sick and require increased vent settings and supplemental oxygen, all I could focus on was getting the vent settings back down to his baseline and getting rid of the oxygen.  Until recently, Jack has never been on routine meds.  My emphasis has always been "less is more".  My need to wean was never meant to torture Jack, but to have something to work towards.  All parents want to see their kids make progress, it's what gives us a sense of purpose and accomplishment.  It's what gives us hope.  Despite Jack's ultimate diagnosis and lack of progress, I continued to wean and to push because I still had hope.  Hope - it's a funny thing. 

Getting out of wean mode is a process.  It takes time.  And that brings me to where I am today and Jack's need for morphine.  Initially, Jack needed a high dose of morphine around the clock to control his pain and allow his body to rest.  Eventually, wean mode kicked in and I tried to get Jack down to morphine on a PRN basis.  The problem with that was, when the pain comes, it hits hard and Jack ends up in respiratory distress before the morphine can kick in.  We went to scheduled morphine every four hours.  Jack did well. So, of course, what am I thinking?  Wean down to every six hours or maybe he can make it to every eight hours.  I know this sounds crazy to most of you, but all I can say is, it goes back to feeling like you are making progress and with progress, comes hope.

The bottom line is, Jack needs morphine on a scheduled basis and he needs it more often than every eight hours. This is what he is telling us. I need to be a better listener and I need to change my way of thinking.  Letting go of the "need to wean" mentality is hard to do.  But, I need to do it for Jack.  Forget progress, forget hope, forget a sense of purpose or accomplishment. It comes down to what will make Jack comfortable.

As my friend, who is one of the docs on my support team, recently shared with me about weaning Jack's morphine:

" ... could not agree more with getting away from weaning as victory.  Victory over what? The disease? We will all have to let our kids with CMD go gently into the night though we have spent the better part of our lives making every effort to do just the opposite - attempt to defy progression, make small concessions but not without a fight and go down paths with no right answer  . . . "

And she is absolutely right and I love her for her honesty.  I can't say enough how blessed I am to have the most amazing people guiding me and supporting me in this leg of the journey.

I'll close by saying to all of you, despite the tone of this post - don't be sad.  Jack's pain is controlled and he is doing well.  When he isn't hurting, he is happy.  He really is so easy to please  - "Give me my vent and give me my morphine and life is good, Mom." 

Okay Jack, you can have your vent and you can have your morphine.

xoxo

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A couple pictures of Jack off  the vent 

(for those who are wondering, the tube going to Jack's trach is not a vent circuit, it's hooked to a compressor that is delivering humidified air. Jack is breathing on his own in these pictures)

How We Are Doing

So we are two weeks on hospice and I think it's fair to say that Jack is doing much better than his mother.  Then again, he has unfettered access to morphine and, well ... I do not.

Jack is doing better. Being able to control his pain and allowing his body to rest has really helped bring him back from that far off place he escaped to when he was trying to deal with the pain.  He is much more alert and attentive these days and is even sharing smiles on occasion. I've been able to wean his morphine down from the maximum dose every four hours around the clock to PRN with a lower dose.  However, every time I think I might have him weaned down to needing no morphine, he lets me know that is not the case.  He's still needing it a couple of times a day.  The million dollar question is why? I've slept very little the last two weeks because I'm relentlessly haunted by the "what ifs".  What if we are missing something obvious? What if whatever is causing Jack's pain is a simple thing that can easily be treated? What if he was being seen by his St. Louis doctors instead of the doctors here?

This, my friends, is where faith comes into play.  Despite all the "what ifs",  my gut tells me that the decision to transition Jack to hospice is the right one.  And, I believe with all my heart that my "gut" is God driven. If I can't believe that, then I've got nothing to go on and I desperately need something to go on.

Being on hospice does come with a few perks.  For one, the coveted morphine is delivered right to your door - no trips to the pharmacy in the middle of the night required.  Your hospice doctor also makes house calls.  I had scheduled an appointment with Jack's pediatrician/palliative care doctor awhile ago, but because Jack is on hospice, she came to the house yesterday - along with the hospice nurse and the social worker.  A bit overwhelming, but also much appreciated and welcomed.  It's a bit of an adjustment to get used to so many people being there for you. I mean really being there - in person, for you.  It's uncomfortable and good all at the same time.

As for me, I used to think I had a pretty good handle on juggling the whole medically complex kid + regular kids + working full-time thing.  Not so much anymore. I completely forgot Eric's parent-teacher conference last week.  But, all I had to do was throw out the "Eric's brother was transitioned to hospice" line and it was all good. Another perk of being on hospice - people cut you a lot of slack.  And lately, I've needed to be cut a lot of slack because I'm missing a tremendous amount of work due to lack of nursing coverage.  The upside to the lack of nursing is that I'm getting to spend a lot of time with Jack - just mom and Jack time.  It's been nice ... and a lot of work.  It's been years since I've done a trach change, changed out the vent circuits and other equipment that needs to be changed out every few weeks or even given Jack a bath, because his nurses usually do those things.  But, I so appreciate this time I'm getting to spend with Jack that I otherwise wouldn't have. Life has a way of working out how it's supposed to, even if it doesn't seem like it at the time.

Mark has been out of town all week and won't be home until late Sunday, and, as much as I appreciate all the quality time I'm getting with Jack, I'm in desperate need of some sleep.  So, Jack and I will be heading to Ryan House this weekend where I can sleep and he can get the love and attention he deserves.

Well, that's the update from here. Sorry for the long break in blog posts. It's difficult to put all that I'm feeling and thinking into words, especially when I'm so darn tired.  Most days, I seriously have to remind myself to BREATHE.  I do feel like Jack is in a stable place at the moment. We are able to control his pain without snowing him - I'll take that.  One day at a time.

Onward.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Just some pictures of Jack .... Just because.

Circa 1999  (~ 9 months old)

Circa 2000  - Jack is in his stander and Elmo is strapped to the oxygen tank stand :) 

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.

__________________________

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!