Pulse Ox Induced Exhaustion

Finally! We finally had three nights where Evie only set her pulse ox off a couple of times instead of the 20+ times a night of the last 2 weeks. Ex.Haus.Ted. A pulse oximeter monitors Evie’s heart rate and blood oxygen level.  It lets us know if her heart rate gets too low or too …

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Ugh

Well...after nearly 3 weeks of sickness, we had a week of recovery. And then I got sick again. And quarantined myself to the basement for a solid week. But now Evie is struggling. Feeling pretty defeated. All the weight she gained since December is gone. She just never got a chance in between the two …

Vocalization Not Required

Who needs vibrating vocal cords to sing? Not Evie.

Moving Forward

We had some forward movement this week on the journey to decannulation (trach removal). When Evie first got her trach at 5 weeks, everyone thought we would try to open her nose again and then remove the trach sometime after her first birthday. Of course, Evie always has other plans and she promptly grew extensive …