WOW! You guys are amazing and so wonderful to have as a support. We had over 100,000 views yesterday as people were checking in on Scarlett's surgery. That is UNBELIEVABLE.
Last night, we saw her in PICU and she was doing very well. She was very swollen and pale, but looked okay overall. She has tons of lines in and out - PICC in upper arm, arterial blood pressure on foot, IV on other foot, pulse ox on hand, blood pressure cuff, catheter, respirator in her mouth, and - most absurd - a drain coming out of her head for cerebrospinal fluid. She is also getting blood to continue replacing what was lost in surgery. Her head is bandaged, but it mostly looks like a beanie hat. However, I did see her little head today and the difference is amazing; the dark, bulging veins are gone, the bruising is lighter and her biopsy site, which was bulging off the side of her head, is now flat. The pressure is released, and that was the most critical immediate need.
Despite the way she looks, she is definitely still herself in there. She is kicking her least-restrained foot, and her toes curl around our fingers when we touch her. She tightens her little hands around our fingers and tries to open her eyes every once in a while. Her little heart rate skyrockets every time the nurses move her around; this is exactly what she did before, except it was accompanied by screaming. That's my girl!
Since she was sedated and asleep, we decided it was best to go home and rest and shower last night while we had a chance. While we were there, we got to see some of the precious and wonderful gifts we have received. While Scarlett was in surgery, she got a flower arrangement that was a yellow smiley face. We saw it being delivered when we went for lunch, thought it was so cute, and then were shocked to see it was for her! She also received a lovely pink fleece prayer shawl blankie from a church in Alabama. At home, we had a beanie knit from home-spun angora - can't wait to put it on instead of the bandages. Then, there was a whole basket of goodies from my coworker Devon - magazines, books, chocolate, popcorn, a DVD...we're set for a day at least! :-)
Once we oohed and aahed over everything, I had a glass of wine...and nearly passed out, I was so tired. The constant rush of adrenaline I have been running on finally ceased for a short time and I slept well.
Now we're learning the ropes in PICU. This is much different than when she was in PICU before, since she was still "normal" then. Then, she was just having vitals monitored, blood work and tests. Now, she is one of the more serious cases in the unit. This unit is secured; we have to buzz to get in. Everyone must handwash and sanitize at the door. It's a very high-risk unit, so they are extremely cautious. She has her own nurse who is constantly draining, cleaning, adjusting, injecting and generally puttering around her bed. There is no food, no drinks, no phones, no computers allowed in PICU. This poses a serious lifestyle change for Chris and I, even compared to what we have done in the hospital the last few weeks. We're taking turns trying to respond to the tons of messages we receive, calling family and remembering to eat while the other sits with Scarlett. We are expecting to be in PICU for at least two more weeks, so we're trying to find ways to get comfortable and try to make the best of it.
Today, she is back on EEG to monitor for seizures. Fingers crossed on that one; the doctors explained that seizures are likely and common in post-surgical brains. She will have another MRI tomorrow as a "stealth" for the next surgery, which is being scheduled for Monday or Tuesday. It's another long day of nervous waiting, but we know she is handling it well.