Post-Op: Day 3

The twins are 16 months old today! Evie had a steady stream of family visitors all day on Saturday, staring with Grandpa and Nana Cermak, then Uncle (and Godfather) David stopped by for the afternoon shift, and I (dad) was the night shift. Here's Uncle David with Evie (who is sporting a new pink bow and PSHU blanket courtesy of night shift nurse Kelly).



Evie is making baby steps of improvement. The really good news is that the blood that was coming up from her lungs has really slowed down. When I was with her between 8-midnight, I never saw even saw any come into her ET tube. For our medical readers, she has been started on a lasix drip (that makes her pee) because she was starting swell and retain a lot of fluids, and is peeing 12-20cc per hour (which is a big improvement over the 5cc/hour yesterday).

She has also started on a Milrinone drip, which lowers her blood pressure and improves her heart function. Because of the Milrinone, her ECMO blood flow was increased from 1.2 to 1.25 to keep her blood pressure the same. She was also given an ECHO cardiogram today as well, but we don't know the results yet. Her main incision dressing was changed, and the drainage out of her chest tubes is also slowing down and is more clear (all of which is a good thing).



She woke up a few times this morning, then again around 7pm (during shift change) and then later at 11pm when I was with her. This was the first time I've seen her wake up and it's heart wrenching. She opens her eyes and looks around. She saw me an tried reaching for me but her limbs are restrained. One of her feet was not, though, so she started kicking with that one. There were two of us holding her down while nurse Kelly gave her some meds that quieted her back down, but it was very tough to watch.

To answer a question sent to me via email, she is given sedation, but is not given any paralyzing medications because the staff finds that this only sends the kids into a panic when they occasionally wake up and cannot move, so restraints are used instead.



Evie really hates having stuff on her face, and following her previous surgeries she was constantly pulling out her cannula and NG tubes. Earlier I can only imagine that she was thinking, "what's going on? who are all you people? why are you doing this to me? what's all this stuff on my face?" When she woke up in the morning, my Mom told me that she started tugging on one of her ECMO blood tubes! You don't want to pull one of those out Evie!

Below is her new blanket:



The embroidery says, "My heart was touched by HOPE P.S.H.U." (Pediatric Surgical Heart Unit)



This is a photo of Cardiac Nurse Kelly, who has also cared for Evie during her previous post-op stays at the hospital. She's on the 7pm - 7am shift with her right now.



This is a photo of Halina, who is one of the cardiac therapist/techs who is always in the room monitoring and adjusting the ECMO machine.



To answer another question sent in about how the ECMO machine lets her heart and lungs rest, the ECMO takes care of the jobs of oxygenating her blood and pumping it throughout her body. Her heart and lungs have mostly been drained of blood, and so while it is still performing the "pumping" motion, it's not working as hard because there is hardly any blood within it to pump out.

We took some artistic photos of Evie because we were trying to highlight her pink bow, but unfortunately it also highlighted all the blood too.

Right now, the plan is still to wean her off of the ECMO machine sometime on Monday (not sure what time of day that will be), so until then it's just more rest and relaxation for little Evie.