And then there is this machine….How I love this machine. It is our lifeline. Pulmology says most kids like Bella are off of this lovely machine by now. Yet here we sit, with a set breathe rate of 20. I have all of her settings memorized – because they have never changed. Not since we got on it in 2009 (except ICU days, but they don’t count). So more tests in January. But I’ve been thinking. Is my love affair with this machine holding her back? Weaning is pulmology’s goal. It’s a great goal. Truly, I would love to see her off too. No, I don’t relish that my daughter is alive because of portable life support, but I am so very, very grateful that it’s here.
What’s the problem? Pulmology wants to push her. I want her to lead. This is the problem we are having – an incompatibility with our approaches to weaning. I feel like pulmology sees two lungs and a heart. I see progress being made in all aspects of her life – school, mobility, feeding, speech, life in general. If we push her too much, she lays in bed and breathes. That is not a life. Quality of life is what I am after. That machine gives her the extra strength to have the energy to do the things that make life worthwhile. But that is my opinion. In my head she is a complete package, I can’t let the focus become solely her lungs, or all the other parts of her life would slip away. But maybe she could just push through it and get off. At what price? How much energy will that take? How sick will she get in the process? So many things that doctors have done to her have come with a price with long lasting consequences. Why can’t we just let her be and let her lead the way? Am I holding her back? I am afraid to find the answer.
I did wonder if you were super scared at letting it go a bit, but how can you not? It's why Bella is here today. If she has to work so hard when she's off, then she is not ready. There is not always a reason doctors can find. Our kids don't go by the book, they set their own rules. Bella has come so far, her development is amazing! It's been a long time since she's been in the hospital super sick. There is a reason why. You! So she takes a machine with her while growing and learning. I do think she'll come off, but in her own time. You are amazing, don't let anyone, especially a doctor, tell you otherwise!
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