A Big Little Step

We, along with Norah's doctors, have have had multiple discussions about Norah's long-term plan. As I've probably mentioned before, Norah has another year (give or take) before she will be big enough to give the home ventilator a try. Her pulmonologist agrees that the thought of an 18-month(ish) Norah in the ICU is a sad thought indeed. All along, I've truly believed that she'll be weaned before she's big enough for the home vent.

Well, we took a big little step today. I spoke with this week's attending physician (who knows Norah well), and we decided she was ready for her first trial off of the ventilator today. We went into this with few to no expectations. We would see how she did, and put her back on the moment she seemed like she had enough. How long did she last? Three minutes. 


Perhaps we need a little perspective here. Aside from very brief disconnections from the ventilator (both intentional and accidental), Norah hasn't been off the ventilator since she was trach'd at six weeks old. She'll be nine months old on Friday. These three minutes were hard work for her. She cried, looked a little scared, and got sweaty (as she always does when she's upset). But the big story here is that her lungs continued to move air well, and she didn't desat (lose oxygenation in her body). Once we put her back on, she was still working hard to breathe, but recovered quickly and went back to playing and smiling (photo above) even before the care team left the room.

So what does this mean? Well, I can tell you what it doesn't mean. It doesn't mean she's coming home tomorrow. It doesn't mean that we suddenly have a concrete plan laid out for her. We'll continue to work on building her tolerance for her time off the vent. This will likely be a long process, and will be the foundation for determining our next steps. Her safety is our number one concern. We also need to make sure we dont work her too hard, depleting all those calories that she needs to grow.

We will continue to be easy on the expectations. As always, Norah will tell us what she needs. It isn't always loud and clear, but we're doing our best. I'm so proud of Norah. I've said it before, and I'll say it again: she is the sweetest, strongest, most amazing person I know.