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Emma in the ICU - Morning Update

Well friends…She did it, she did it! (In a happy sing-song voice)

Emma was extubated yesterday at 4pm and made it the entire night on her non-invasive vent…the little face-mask that she wears at home. This is one big step in the right direction and has calmed my Mama heart that she has the fight to breathe all on her own. She is already weaning down on the settings of the vent and is tolerating it well. And it may just be complaining, but hearing her voice again has been AMAZING. We are on the right track in the respiratory department and hope over the next few days she will wean meds and vent settings enough that they will be comfortable to move us up to the floor.

Our current hiccup, something that really threw us for a loop, is a potential bowel obstruction. Over the past weekend, the nurses noticed her belly was very distended, the food they were feeding her through a tube into her intestines was backing up and coming out a tube in her stomach, and she hadn’t had any full diapers in a while. After trying a few constipation treatments with no success, she was whisked down for a CT scan where a contrast liquid looked to be stuck in her bowel, not moving. The past two mornings an X-ray has shown the same contrast in the same location indicating a possible blockage, and a possible need for surgery. BUT…there is another possible scenario, one that we are desperately hoping is the case. When people get very sick, it’s possible for their intestines and bowel to become a little paralyzed in some spots. This is called an ileus. Plus she is on a boat-load of opioids for pain management and those are notorious for causing constipation. So the hope is that these two things combined are the reason for her issues, and that there is not any physical blockage that would require surgery to remove. Emma’s GI system is the one part of her body that has always worked so well. She is the most regular little girl I know. It makes no sense for there to be some major new problem, and we hope her poor little body just went through so much that her GI system froze up a little bit. But they are monitoring that closely and it will be another factor to determine our release from the PICU.

But on positive note…her seizures have been amazing this admission. In fact, she had a 12ish hour EEG that showed NONE! I take this with a grain of salt because she has been on a steady drip of Versed and other meds that control seizures, but it’s been a big win for us that her epilepsy hasn’t snuck in to be another issue to deal with on top of everything else.

AND…Abby was discharged yesterday and is home and doing well.

Hospital life is HARD…but things are on the up and up for the Gillaspie crew. I’m sure it was all the good vibes that were sent our way Keep ’em coming!

With love from the PICU,


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