Friday, September 20, 2013

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.



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)


Susan said...

Hindsight is alway 20/20. It's natural to look back and reflect, but remember you've always done what you thought was best at the time, with the information that you had. There is no guide book for what to do for our kids. I'm glad that right now you have a friend who is honest and is helping you figure out what is needed at this time. Hugs and much love!!!

bettyd said...

I have a small understanding of what you are talking about. We tried soooo hard to keep Will from the feeding tube. What kind of crappy parents can't feed their kid! It was a tough one to give up, but spending 30 minutes on 3oz of pureed food only to have him vomit up about half of it, was definitely not enough calories! We had to give it up. He wasn't even enjoying eating because it was such a struggle, so he didn't even enjoy something more tasty and sweet.

I know you are making the best decision for Jack and your family. We talk of how our kids can tell us so much with their body language, but you are right that sometimes even us, who tell others to listen/observe what our kids are saying, forget to listen ourselves :)

Catherine said...

It's so difficult to know when to give when it's an uphill climb, because you know that when you give it up too soon, you do lose a lot of ground, and what you end up getting is a new baseline that may be worse than the other I don't know if your years of keeping Jack off the vent for so many hours a day was not good or was a good thing for Jack, and I don't think anyone could tell you for sure as the quandry would not even exist if that were the case. I have an issue myself where we have to decide when to make the move to supplementing with oxygen. Would the equipment and trouble be worth it? Would it extend life? Or is it better to keep those lungs working a bit harder to get the oxygen needed and not have to move into equipment mode? I've seen the transition, and the family member who made is now 100% there and will be moving to bipap and vent most likely in the next few years. But his caretakers have no advice either.

You just do the best you can and make the best decision given the circumstances of the moment. Hugs to you.

Christy said...

We think very much alike. If it makes you feel any better, I'm pretty sure I would have made all the same decisions as you have. I push before I don't. And only when forced, do I stop pushing. I don't blame you one bit for struggling to accept a daily dose(s) of Morphine. The fact that you have (at least temporarily) speaks volumes. You are a good egg, Ann.

Hugs to you and Jack! xoxo