Surgery #6 (Tracheostomy)

2:45pm

«« Trach Time »» Well it's finally that time - Evanna is in the OR and having a tracheostomy procedure done. We're incredibly nervous, because though it's a straight forward procedure, the mechanical valve in her heart and heparin medication she's on slightly complicates things. I'm hopeful it will go well, and she'll be just fine...this is her 6th surgery after all.

A little bit of honesty » I didn't sleep very well last night, and so I'm a little more emotional at the moment. Though this procedure is the best thing for Evanna at this time, I was still overcome with a lot of anger. This journey has been incredibly long and even unbearable at times. I screamed "how much more will you put us through?" and silently cried myself to sleep last night. Evanna has been through so much since her first open heart surgery back in October, and even once we bring Evanna home, this journey will be far from over. We have no idea of a life expectancy with Evanna, and though things are stable with her heart right now, we are very aware that things can change in an instant. I put on a very "strong" and "brave" face everyday, but there are times (like today) that it's harder for me to hold it together and be that person. I often get the comment "you're so strong", but really I'm just trying my best to be a good mom.

4:30pm

Evanna is out of surgery and doing well. As to be expected (due to the heparin), it was a little hard to control the bleeding, but it wasn't anything they couldn't handle. The next week is going to be really rough has they try their best to keep her sedated and as still as possible. Evanna has such a HIGH drug tolerance, and she shocked the OR team with how much it took to sedate her. They joked she could probably "out drink them all", and were amazed with her fighting spirit.

Thank you so much for all the kind and beautiful words of encouragement this afternoon. I've been warned that this is going to be a rough week, but once they do the first major trach change in a weeks time, everything will go so much smoother. Prayers for a good week ahead are much appreciated. We really need this recovery to go well and for them to get her heparin levels back on track again. Though they normally don't put children under 12 months old on warfarin, they're making an exception with Evanna in hopes that it will increase her level and help stabilise everything. It tends to work better with mechanical valves anyways, and so that's what they're doing.

Evanna has a good nurse scheduled for tonight who will hopefully clean her up real nice, and I can take a close up tomorrow.

xo The Irvine Family

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