|Lillian immediately after surgery|
Before they had changed the ECMO machine, they had the Heparin (an anti-coagulant) levels in the lines fairly high to prevent them from clotting. This clearly didn't work, but we had to balance the risk of the clot against something else, as they had found some bleeding in her brain. This is extremely dangerous as blood in the brain ventricles (note that brain ventricles are completely different from heart ventricles that Lillian does have an issue with) can push against the brain tissue, causing brain damage and even death if it gets bad enough. We have to carefully balance that though, as using too little Heparin can cause the machine to clot as it did once before. Plus she would be at risk of a stroke and her heart has to work harder to push the blood, giving it less rest, completely counteracting even putting her on ECMO. If we over do the Heparin, we increase the bleeding on the brain, which could cause the aforementioned brain damage or death. It's an incredibly tight line to walk. However, despite having these complications, we still saw some hope from Lillian, as she was already stirring despite being on full bypass and hopped up on tons of pain medicine. Once they finished with the ECMO circuit, we finally saw Lillian's eyes open a bit.
Especially with how fragile she was after surgery, it was great seeing signs of life from her.
And despite the fact that she was functionally unconscious with all the medicine, Lillian's natural reflexes were in full view, as she worked on an imaginary pacifier.
One of the side effects of changing the ECMO machine was that Lillian had to have a flood of Heparin to prevent the lines from clogging during the switch. As you might expect, this caused the bleeding in her brain to get worse. This we unfortunately just had to deal with as not changing the clogged ECMO machine would have been fatal eventually.
Lillian's second day in the CICU was not as eventful as the first, but had its own ups and downs regardless. On the good side, we could see that Lillian's blood pressure had started to pulse on its own (the atrial lines she has allow for continuous blood pressure monitoring as opposed to having to use a cuff), which was a sign that her heart was getting stronger and starting to beat on it's own initiative, something that it had not been doing yesterday. To compare, immediately after the surgery, her heart was so tired that her blood pressure line was flat when it should have been pulsing similar to a heart beat or oxygen levels. On the bad side, it looked like Lillian had a minor seizure. It was small and we don't think it did any damage, but Neurology still wanted to start her on a anti seizure medicine just in case it was the start of a trend.
There was more good news though, as Lillian's chest bleeding had gone down, and she reacted well to a scale down in ECMO, exactly the type of thing we needed to take her off of ECMO.
On August 7th, we were ready to try to take Lillian off of ECMO. This started with a trial phase where the circuits were clamped shut, but she was still connected so if she still needed it, it would be quick to put her back on it. The trial was about 2 hours, after which they decided Lillian was doing well enough off it to take her off ECMO entirely, which was a major step in her recovery. Once they took her off of it entirely, the surgeons told us that her heart looked good and there was no bleeding as a side effect of de-cannulating her.
On August 8th, Lillian's condition took a turn for the worse even without ECMO as she started developing a fever (at 38.4c). This is normally the first sign of infection, which is especially worrisome given that Lillian still had her chest open and was still in the immediate post operation time period. Whether it was from an actual infection though or just a standard immune response from having them change things around in her chest, we weren't sure. The next day, August 9th, the fever got worse (39c or 102.2f) and her white blood cell counts were up. Since we now had two signs of infection (but no sure confirmation from early labs) we began treatment with a wide spectrum antibiotic and ran much more extensive labs to confirm any possible infection.
Later in the evening on the 9th, we were able to get Lillian's fever down to 38c, allowing us to start using Lasix again, which was important as she needed Lasix to get rid of fluids, which in turn would allow us to close her chest. However, we decided the next day that switching the PICC line from her arm to her leg was more important than closing her chest, as the PICC line in her arm looked like it was clogging, which would have severely damaged one of her vessels to the point of making her next surgery much more difficult. In the end though, after waiting most of the day for the PICC line, it was delayed due to an emergency with another patient.
Changing course from a daily recap for just a minute, I took these pictures to try to emphasize how many IVs she had going in. Some had been removed already (especially the ones relating to ECMO), but there will still 10 or so, all consolidating to the PICC line eventually.
On August 11th, we were able to get a new PICC line in her leg after taking her to Interventional Radiology to have it placed. Although a trip to Interventional Radiology is not normally required to place a PICC line as it can normally be done at the bedside, Lillian's vessels were extremely thin, requiring the more advanced placement. This timing was very good as her other PICC line in her arm had in fact clogged at this point. Even with the clog, we had to leave it in for the Lasix as that requires a separate line as it does not interact with other medicines well. More importantly than the PICC line though was that they were finally able to close Lillian's chest after having it open for 7 days. Having a chest left open that long is not normal, and was putting Lillian at increased risk for infection. Unfortunately, it looked like the closure also created a pneumothorax (basically a small air pocket) in her chest. This required a new drainage tube in her side, but was a relatively minor issue.
Finally, chest closure!