NO NEWS IS GOOD NEWS /////// I don't mean to have these long pauses in-between updates and milestones, but I'm sure you can all relate to those periods that routines, work, and "life" in general are all that you have energy for, and things like social media just isn't a priority – plus we're just trying to enjoy some everyday normalcy with friends and family this summer. I do sometimes start to feel a little guilty when it's been longer than a week or two between posts (as I remain conscious to those who've come to know and love our little girl), or the fact that it's been days since I've put Evanna in some real clothes (she's been chilling in just a diaper the past 3 days 🙈) and snapped a few photos..... but can I blame it on this heat wave?? [EVANNA UPDATES] Two weeks ago, Nick took Evanna to her cardiology appointment, and everything looked great– so for the first time ever, we've been cleared for SIX months until our next cardiac appointment. Barring any arrangements that would have to be made IF we hear that Dr. Hanley has accepted Evanna's surgical case (it was confirmed that Evanna's cath package was couriered to California on July 6th), we won't see Dr. Fruitman until after the New Year -- crazy!!
Part of the reason for this nice little extension, is we're currently seeing Respirology every 4-6 weeks for continued ventilator weans, so there are still "specialist eyes" on Evanna on a fairly frequent basis, and we're blessed with very fluid communication between these two specialties at ACH. Nick and I agreed with this decision, as we know our cardiologist is just a phone call away, and see this only as a huge step forward.
Speaking of Respirology, we see them in less than 2 wks with the goal to decrease Evanna's ventilator PEEP pressure from 8 to 6 (which is practically nothing pressure wise!) and inform them of our "sprinting" status. While it varies day-to-day (some days she has less stamina than others, and we always put her back on the ventilator if she's not handling it well), I'm ecstatic to share that Evanna just did a FOUR hour sprint off the ventilator this morning 🎉🎉🎉 #slowandsteady #evannasroadtorecovery #evannasspecialheart #evannastrong