Wed Nov 7th
ECMO trial off 
New ECMO circuit
Obama takes 2nd term as President

My Mom and David got here early to hang out with Ruby and Emmaus, so we got a head start for rounds. As we were saying hi to Noa we noticed that the cannula site on her neck was bleeding pretty bad. Thats been a concern of ours for a while now but it was starting to get out of control. They obviously thought it was a major concern as well because we discussed it during rounds. The problem with ECMO is that Noa's blood is thinned out as to not clot the circuit (ECMO machine). So there is always a concern of her bleeding. Noa's circuit is 2 weeks old and is starting to show signs of clotting. Things like "platelets" that should be going to her body to help clotting are being costumed by the circuit before they get to her. We knew that this would eventually happen and that two weeks was a long run on one circuit. We also knew about the risk of bleeding while being on ECMO. 

Best case would be for her to come off ECMO before they need to change the circuit. The plan for the day was to have a fifth time to trial off. We knew that they would push her a bit and let her go a little longer off ECMO this time. She was looking good from all other standpoints to have a good trial. Ventilator settings were reduced and dialysis was even scheduled to come off today to see how her kidneys do. We headed back to the RMH to spend time with the kids before we had to get back at 12:00.

Picture prior to ECMO change and without tape on her mouth...beautiful

We got back as things were getting started. The whole trial this time lasted a little longer than an hour. Which was awesome! I said in a previous post that it's not so much about the length of time, but how she does during it. It sort of goes together, the longer you''re off ECMO means you're doing pretty good. She was dong great and we could tell that it was a serious discussion about if she should come off. The blood gases that were coming back were showing her to be acidotic and they didn't understand why. In the end they decided it better to keep her on ECMO and switch out the circuit that night. weighing the risks of the two. They said that if she was in a position to be forced off ECMO, that they would have taken her off, but thought that with the acidosis it was too much of a risk. I just want to clarify that, decisions like these are basically deciding on what is the least amount of risk. Being on ECMO is still a serious risk with bleeding (like we are seeing), and having to switch the circuit is a step backwards that comes with added negative effects. Again we came back to the RMH to regroup, rest, eat, and get ready for the circuit change later in the day.

Heidi got the call in the evening about the circuit change. My Mom and David were gone so I went first and Heidi would come soon after. When I got there, there were two ECMO machines in the room and things spread out ready for the change. Noa's heart rate was up pretty high and her blood pressure was down pretty low and an X-Ray of her chest was causing some worry. The X-Ray looked like her heart was pushed back to the right and this might be part of why her HR and BP numbers were high and low. In the end, she stabilized and the concerns were addressed. I was sending Heidi these crazy and stressful messages hoping she'd get there soon. She got here just in time and we settled into your corner of the room to be out of the way. We wore surgical masks and hats (hair nets). The procedure took less than a minute but the preparation was pretty stressful, even for us (and in the end, we felt pretty fortunate to be in the room during the circuit change...I guess it wasn't always allowed). The nurse heading it up talked through the plan in detail and the role everyone was to play. Like you'd imagine, things had to be precise, simultaneous and accurate. They got all the motions worked out and everything sterile, ready to go...I think that most of us held our breath that whole minute (the bedside nurse even mentioned she had to go to her 'happy place' because of the tension in the room).
Noa's vitals slowly started to even out, the old circuit got wheeled out and the new one took it's place. 

It as an eventful day for all of us (mostly Noa).

We waited until things settled, then went back to have dinner with the family. We felt good about leaving her on ECMO...even though we received a bunch of apologies from the staff that she wasn't 'ready'....I don't think we were ready either. We understand that once she is off, there is no going back. We returned with mom and David and the kids later to have a visit with Noa, and although she looked pretty flush (red-faced), we felt good about her. The ECMO staff were busy trying to get her fluids figured out because with the new circuit its not needing as many platelets and blood thinners. We have alot of confidence in the staff here. So that was Wednesday!

Its crazy to think of a helpless little baby at the center of all this activity. We are praying that she continues to fight and have the will to live. She has good and bad days like any person. She lets out cries with tears (but they are silent because of the tubes in her throat) and she looks peaceful other time. This has got to be hard on her.