Thursday, June 7, 2012

Cautiously Optimistic

Here's the deal. We have big news. I'm cautious to share this, because nothing is certain yet, and we still have a long way to go but... well, let me give a little backstory for those of you that may not know all of the details of Norah's saga.

When Norah was first trach'd, it was because her little body caused her little lungs to be restricted from working properly. Oxygen saturation was never a problem, but she wasn't able to blow off her carbon dioxide. Her airway wasn't the problem either; she needed to be on a ventilator so she could be given pressure support to her breathing. Who would have thought breathing was so complicated? Trust me, it is so complicated.

Though I still believe that placing the trach was the right thing to do, at the time no one foresaw that it would lead to such a long hospital stay. No one thought that perhaps she wouldn't be compatible with any ventilator but the fancy-pants ICU-only Drager Evita. The girl has expensive taste.

Things were a little sketchy at first. Norah had a really rocky first 6 months of her life. She was constantly desatting (turning blue). She was needing constant intervention from the care team by bagging her or even that awful day that she needed CPR for nine minutes. I was tired of being the source of the awful code blue alarm in the hospital. But somewhere along the road, Norah turned around. She became stronger. She started playing and developing. She wasn't just surviving anymore... she was thriving. Norah told us what she needed, and we listened. It was with the excellent health care that she received, and love from us as well as all of you, that she began to do so well. Now she has a bright future ahead.

So what's with the long story and the dangled carrot of big news I have? Well, on Wednesday, Norah passed her previous record for her longest stay at South Davis. We had officially been there eight days. It was time to try her on the Trilogy vent (a vent that they don't have at PCMC), which will do a mode that the typical home vent (LTV) won't do. It will do AVAPS (Average Volume Assured Pressure Support), which, long story short, should work for Norah. She did fantastic. She didn't even notice the change. Okay, here is the big news: this is a home ventilator.

We're not going home today, or tomorrow, or next week, but it means that we will probably be home before our original guess of 18-months while we waited for her to grow to be able to take a 50cc breath on the LTV's volume mode. It will take time for her to transition from the Drager to the Trilogy. Plus, she has surgeries coming up in late summer/early fall. They're going to have to teach us a million things before we'll be ready to take her home. We will work up to it with short trips outside, then a few hours out and about, then maybe even a day trip home. It'll take awhile, but we're getting there. The light at the end of the tunnel is still far off, but I have a feeling we've finally passed all of the bends and curves that have prevented us from even seeing that it was indeed there.
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