Mon, Nov 5th & Tues, 6th

It was a very restful weekend. Noa rested after Friday's trial off ECMO, recovering from the the stress for a bit. Monday brings a rotation of doctors we haven't met yet (from the NICU and  PICU), so today's rounds had a different feel to it. We went through all the numbers, levels, and vitals, (everything looked good) and the plan was to attempt another trial off around 2:45pm. At 12:00 Noa was placed on a different ventilator called a VDR (this ventilator should be easier on her body and it takes more CO2 away since that's been an issue on the other trials).

It happens the same as all the other times, where you're looking around wondering when things will get started, and within seconds of each other, all the right people show up and it starts... The nurse running the circuit announces the decrease in flow, "We're running at 50%" (that's when everyone in the room starts swaying with feet planted). All eyes are on this one monitor reading all of her vitals. A couple more people show up but nobody loses focus. The Dr. announces that Noa looks good and asks if anyone objects to clamping off. The ECMO nurse clamps off the two lines going to her neck (kind of like jump starting a car battery, you have to do one before the other). Its an intense moment. "Off ECMO"for the 4th time. You're pretty much holding your breath, checking the clock, and trying to read the faces of everyone around you the whole time (at least Heidi and I).  Heidi was at Noa's side, holding her feet in one hand and comforting her with the other (I pace and take pictures.). On the other side of Noa is the echo tech doing the ultrasound on her heart during the whole procedure. Things looked good, they were taking blood gases about every 10-15 minutes.  30 minutes pass before they decide to put her back on. Her best and longest trial off yet. Her heart did much better, no shunting, only bilateral flow. Basically this means less hypertension and better lung/heart function. She's still having trouble getting rid of the CO2 which makes her blood acidotic (sick). They were hoping that the VDR (the new ventilator) would help. The value is found not so much in how long she's "off ECMO", but it's more about how good she does while she's off....because we want her to stay off. Everyone was pretty happier with today's trial.

They want the ventilation setting to be low to mid when they decide it's time to come off ECMO. That way they have some room to go up on settings and levels if she needs. Today,  her setting were just to high where they had nowhere to go if they wanted to take her off.

In most cases you'd say, "let her take as long as she needs, there's no hurry. Take her off ECMO when she's ready". The trouble with that is that we are already on borrowed time with this circuit. Over time these machines develop clots in the tubing or parts and sometimes you can replace a single part (they replaced the "lung" on the machine on day #3 that took 29 seconds), and sometimes you have to replace the entire machine, or "circuit". This circuit we are on now is going on 2 weeks. Two weeks is a long time to be on the same circuit and they were hoping to have her off of it by now. It was decided to give Noa a day of R and R, and try again on Wednesday (11-7).

Tue, Nov 6th

Headed over for our normal routine, get our coffee from the Kite Cafe (I think they're getting to know us) and head up to the turtle floor for rounds. We walk down a corridor and make a right and we can see into Noa's room. We saw Jennifer (ECMO coordinator...and quickly becoming a friend!) and right away Heidi said, "uh oh, she 's got that, somethings wrong look". It was her body language. We get to the door and she asked if anyone had talked to us yet. She told us that last night Noa started having blood come from her Gastric Oral Tube (OG). She said that, "it looks bad, bright red".  She said that it wasn't from the trial off, but most likely from the tube itself and the suctioning irritating her stomach lining. They have to keep the fluid and air out of her stomach to allow her lungs to develop so they were suctioning every 2 hours. They extended it to every 4 hours and also droped the ventilation on the VDR down. 

By the evening, Heidi's mom had departed and Justin's mom and David arrived and we (Heidi and I) were able to do an evening visit with Noa. The blood from her stomach has slowed down, and her evening x-ray of her chest looked really good! Her right lung is opened up beautifully and you can slightly see the top portion of her let lung...could be the VDR, and most certainly prayer. We went to bed feeling hopeful and encouraged...and looking to another trial off today. 

We want to get this blog out there...so we will attach some photos later and a video of her eyes open. Next trial off is set for 12ish today (Wed). We are so excited that she is 'trending' better. Everyday is a God given blessing. Thank you everyone so so so much for praying it really does matter.