May 13 update

Tonight I got to hold my little girl for the first time since last Monday. It was so amazing to have her in my arms and just think about what she has been through. There were several moments over the past 11 days when I was not sure if I would have the opportunity to hold her again.

Short update today because it’s late and we need as much sleep as we can get these days. We are always back at her bedside by about 6:45am each morning so we can be there for shift change of the ICU nurses and rounds. For the first week we slept at the hospital, but this week, we have spent a few nights at home, which is a really nice break from the hospital.

Overall, another day heading in the right direction. Addison is still having some issues with her lungs, but the doctors and nurses have been tweaking the settings on her ventilator all day. She is also getting some physiotherapy to try and get the mucus and secretions out of her lungs. She is no longer paralyzed and her pain medication is a lot lighter, so she is a lot more alert and awake…she definitely has no hesitation in telling us how unhappy she is with her breathing tube. She cries silently because the breathing tube means she can’t make any sounds. It’s hard to see her like that but she needs to get a bit stronger before the tube can be removed.

Neurology did an overnight EEG scan of brain activity, and they did see a few more ‘blips’ of seizure activity but with no physical signs. Still no indication of what this actually means and it may be a long time or never before there is an answer. When she is healthier, they will do a more in-depth CAT scan or MRI to see what’s happening in her brain. For now, she is getting anti-seizure medication as a precaution. We will worry about that when someone tells us to worry about it…right now, our focus is on getting her off the ventilator and out of ICU.

Hoping for a good night of rest for Addison and another positive day tomorrow!

Elaine, Aaron and Addison

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