Shortly after she came back from the CT was when she spoke those few words. Oh my goodness, I can not tell you the joy that filled my heart! It seems unlikely given how much sedation she had. But, Maia was quite alert even with that and pain medication. We quickly called family and posted here about the exciting news.
This lasted about 30 minutes, then I think she was exhausted (and probably sick of us trying to get her to talk more - lol!). The ICU resident came in to tell us that the MRI looked "overall better." He was very vague and I couldn't really get a sense of whether it was good news or bad. The CT scan results then came back normal which is reassuring on one hand. I'm thankful that they didn't find any abnormalities that would have required an additional surgery. On the other hand, it doesn't provide any insight in to where all of these bacteria have come from.
We were told that the neurosurgeon was going to come and talk to us about the MRI results. Mark and I had dinner and then he had to get home as a friend was coming over. Dr. K arrived about 9pm. He said that the results of the MRI showed no improvement in the fluid collections around Maia's brain. What?? In spite of the fact that she has drained nearly 1.5L of fluid from the space surrounding her brain, there has been no change. While this is concerning, the team is reassured by the fact that no infection has been found in the fluid cultures of these areas. Based on these two factors, the care team (neurosurgery, infectious disease, and intensive care) decided that the risks of leaving the drains in place outweighed the benefits.
So, Maia got some more pain medication and Dr. K removed 4 of the 5 drains. The EVD (extraventricular device) remains in place, but the ones lying on the surface of her brain are gone. It was so hard to try to calm Maia during this. She was in horrible pain and so anxious. To hear those gutteral cries was heart breaking. 3 of the 4 drains stopped bleeding on their own (apparently, they will close spontaneously), but the 4th kept bleeding. So, they had to give conscious sedation medication and suture that.
By the time we were finished, Maia's bed was a disaster. Because everything but the EVD drain was removed, I got to hold her while the nurses changed the bed. Talk about precious moments!! She's back in bed now. Mental status not as good, she's opening her eyes but that's about all. I'm sure that removing that tubing caused some irritation of her brain. Hopefully, this will be improved in the AM.
Today's events offer more questions than answers:
- Where did the infection come from?
- What do we do to prevent it from recurring?
- Where is the fluid outside her brain coming from and will it continue to build up? If so, what risks does that pose?
- How has this horrible infection affected Maia cognitively?