Emerson had an okay day. She seemed to handle feeds well, so they kept increasing the amount she gets through her tube each hour. This morning, she threw it all up because she had too much air in her stomach, so we stopped feeds for an hour, started up again, checked her residuals (remember? this is the nice way of saying the stuff we pull out of her stomach, measure, pour into a cup and then push back into her stomach) and she was ready to increase again. So we are up to 70 mL of formula an hour (our goal!). So this is all good.
The plan, if you remember, is to train Emerson for extubation. It is like traning for a marathon... but in a few days. (I am thinking of making a mix cd for this training. My brother in law will be happy to know that the two songs that immediately come to mind for this mix are from Rocky: “Getting Stronger” and “Eye of the Tiger”). Two days ago, we did a volume support trial for two hours. Yesterday it was four. Today it is six; tomorrow is eight, then 12, then 24, then extubation. I really like this plan. It is a good work out regime, and- I think- the best we can do to work those weak muscles. The plan, though, will have to be adjusted if Emerson cannot/does not respond well. Yesterday, Emmy was a rock star. She handled that four hour trial like it was an insult- too easy. The only problem is that when it was done, she let the vent do all the work for her instead of breathing above it. I don't think she was pooped; I think she was just being a bum. Today, 2 1/2 hours into her 6 hour trial, Emerson stopped breathing. The vent beeps and says "Patient not working" and it waits however many seconds for her to start working again before breathing for her. It also beeps if Emerson's respiratory rate hits 10 (that is low). So anyway, she stopped breathing, and when I grabbed her hand and tried to get her to wake up, she wouldn't. Luckily, the nurse just lifted her higher on the bed which woke her up and caused her to start breathing on her own again. She has two more hours of this volume support test. She is currently breathing at a rate between 11 and 17. I am really, really bummed this test did not go well today, but I guess I should not have expected each test to go perfectly. We consulted the doctor and we'll see what she says she thinks we should do from here. I am guessing that if I make that cd and play it for her on repeat for the entire trial, she will rock out and push herself harder. Maybe I’ll mention it in rounds tomorrow as our solution J.
About 5 minutes after all that drama, Emerson threw everything up in her stomach. We don't know why. So now we have temporarily stopped her feeds, too. While this is a road bump as well, I don't think it is as worrisome as the respiratory stuff. It is just unpleasant to see her vomiting and all upset afterwards.
That brings me to the title of this post, I guess. I was napping this afternoon- because Emerson was napping, which means we will both be up tonight, I bet- and this line from Vonnegut's "Slaughter House Five" was running through my mind. It is what he and his protagonist said they want for an epitaph, so it is kinda morbid and the plot is totally unrelated to our situation, but the phrase itself is not. I kept thinking of how Emmy has had a bit of a rough day and how upset she gets now at the tube in her mouth and the work she has to do, and when we bathed her today, I could not help but get sad at all of the bruises and scars she has on her body. So I think that is why this phrase kept popping up in my mind; everyone says Emerson will not remember a moment of this experience, but I hope that it is even better than that. I hope that because of the drugs she is on, everything is beautiful and nothing hurts. I hope that is what it is like for her right now, as I watch her sleep.
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