11-12-13: Alvin and the chug chugs

5:25 pm. Ava's dialysis machine was switched out today. Each machine has a name. This new one is called Alvin. It operates on water pressure and the dang thing has a loud sputter-chug-chug every hour or so that startles anyone in the room because it sounds like it is struggling to function. Apparently it's not an issue but it makes my heart beat a little faster every time.

If this ride is a roller coaster, then today would be one of the slumps. Her white blood cell count was a little higher-an indication of infection. We had a meeting with an infectious control doctor to brainstorm how this all started, but I imagine there wasn't much insight since we were only home for 2 weeks and Ava hadn't gone anywhere and the people in our home were all vaccinated.     Around noon today they switched out the dialysis machine, so she was off for about an hour and a half. This isn't a big deal-it's not like it's providing continuous life support like the ECMO machine or the ventilator. Around the same time respiratory therapy came and retaped her intubation tube in her throat. After that her oxygen saturations dropped. After about 30 minutes of this they got a chest x-Ray to make sure the ET tube was directing oxygen to both lungs (in the mainstem) instead of slipping into just the right lung (technically the bronchi). It was slightly to the right so RT pulled it back about a cm which helped a little. My heart was beating super fast around 5pm because the O2 was still not where it was earlier and the nurse was having to increase the epinephrine and vasopressin heart drugs repeatedly to keep her blood pressure up. Right now her vital signs are holding up a little better and the nurse is able to wean the heart meds again.

The vecuronium was turned off today around 11am. This is the paralytic. They said it would take at least 6 hours for the body to clear it enough for Ava to be able to move. They took away the EEG machine that was monitoring her brainwaves for seizures, so they wanted to make sure her body wasn't paralyzed if she had another seizure so that the nurses could see it. The ventilator she is on provides very unnatural breathing, though, so she may need to be paralyzed again if she wakes up enough to fight the ventilator.