PCICU Day 11 & 12

Evanna nasally intubated, but enjoying her soother

So Evanna stabled out again during the night after her failed extubation. Generally she mostly sleeps throughout the day, but she's having more and more periods of being awake and looking around and even looks directly at me. She's also starting to suck on her soother, and getting better by the day with holding it in. Sometimes she's almost angry that it's just her soother and not her bottle when she's not allowed any food because she's going in for a procedure.

Yesterday they finally took out her left JP drainage tube. When Dr. Horn went to go close it, he decided not to give her any extra painkillers or sedatives. I was so proud when Evanna barely flinched as he pulled it out - what a little champ! She still has one drainage tube left, and they were hoping to take it out this morning, but there was still a little bit too much fluid in it this morning, so they're going to give it one more day.

They did also did an ultrasound yesterday, and originally her diaphragm looked normal. However later in the afternoon the report came back with a change saying that while her diaphragm looks normal and moving in the right direction, it looks like there is indeed some weakening. This would explain why she's having a hard time being extubated and it fits with having open heart surgery and her chest being left open for a few days. Basically her diaphragm got stretched, and because it's a muscle, it just needs time to heal and return to normal. There is no telling how long that will take (days to weeks), but IF it's the sole reason of why she's having a hard time breathing on her own, then at least we can make a plan.

They're still going to do a few other tests to rule out any other possibilities, but I definitely agree with the explanation that it's a weaker diaphragm that's causing all of these issues.

Today they played around with the ventilator a little bit, but for the most part, we've mostly been hanging out. She has a laryngoscopy/bronchoscopy booked this evening in the OR, and depending on the results, they'll also do a CT of her lungs.

As for a long term plan, they will continue to keep her ventilated for a few more days, but then try to extubate again early next week (depending on pending test results). However they'll first extubate her to a BiPAP machine to help maintain the pressure she needs to breath. Then from there, they can slowly downgrade to a CPAP, and then eventually to high flow cannulas.

Because they have to go through the BiPAP route, they need to insert another central line because one of her IVs is in her head (her chubbiness makes her a hard poke!! Even for an anaesthesiologist!) and would get in the way of the mask.

Overall, I've learned to never go into a big surgery with expectations and that we just have to be patient and know that Evanna will heal in her own time. As for discharge, we're still looking at another week or two here at the Stollery. While it sucks still being on the PCICU, at least it means she still gets one-to-one care.

I also have to say a big THANK YOU for the outpouring of the love, comments and sweet messages we received after our last post. It was an emotional night, and we're grateful for all of your support.

xo The Irvine Family