Good morning,
Rounds were just finished up and Ruby had a good night. There was a small issue last night where they increased the pressure in a cuff on the breathing tube that prevents leaks when on the ventilator. They noticed that the volume being exhaled (coming out) was lower than the voluming being inhaled (going in), which indicates a leak. When they increased the pressure Ruby didn't like it. As the nurse said to me, when she doesn't like something "She can't tell us with her voice, so she tells us with her vital signs." They quickly realized what caused the problem and lowered the pressure in the cuff and she was happy again. They think it was just that the increased pressure felt like something caught in her throat. As for the leaking air it is probably from the nitrous oxide machine that siphons some volume off to sample it. They also said there could be some small leaking, which is okay.
Since her procedure yesterday she has accumulated about 200ml of fluids, they had put up her fluid intake at some point yesterday too so that definitely contributed, so they are working to reduce that today. That is what is causing her face to be so puffy. They want her fluids lower for when they challenge her heart again this afternoon- they will do that around 3pm. The doctor told us this morning that she is still doing well and things are trending positive, but she is sure that she won't be coming off the machine today. We weren't expecting her to be off of it today though.
We still have a long road ahead of us. Once she can get off of ECMO she will likely still stay in the PICU for 5-6 days while she recovers and gets her chest closed back up (they'll leave it for a few days after she is off the machine as a precaution). Our hope today is that the heart challenge goes better than yesterday and that overall we see a positive trend in her overall.
Thank you for all the prayers for our little girl, she is making progress.
