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.
(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)