Once again, the "weird" case..

Today is Post OP day 2. Vivian is progressing, slowly. She remains flat until tomorrow at 6pm. She cries when you touch her, move her or even look at her sometimes. However, it's getting better. Obviously, she has significant pain (Hellooo.. 16 level laminectomy).. but she also has significant fear. Her cry is about the same whether she is being turned or looked at funny by a doctor. I hate that she has fear. I hate that she has pain.

She continue to move her arms and legs, HELL YESS! She also has sensation. If you lift the blanket off her leg, she is aware. WHOOO!! She's very hesitant to turn her head. She does very small movements with it. We played some music today and she did the smallest, cutest head bobble ever. I love that baby and her love for music. When I began to sing she said "Not you.. me!". She says most things in a whisper, I can tell her throat is bothering her. 

MRI confirmed.. NO MORE TUMOR! I like the way Jake's cousin put it "Go back to hell where you came from!". Small blood pooling, but very little and as expected. I love me some good news!

However, the news that.. is good? bad? weird? Weird.. yes. We don't know what this tumor is. It had  necrotizing granuloma cells in it.. which indicates an inflammatory response to infection. So, now we have Infectious Disease back on trying to figure it out. We are once again the "Weird" case. Great. In fact they used the words "baffled". Awesome. They have done blood cultures, a TB test, tons of blood work and continue to run the biopsies through testing. All of these tests take days to a week to come back. Nothing that's going on with her is cookie cutter anything. They aren't leaning towards TB, but are testing it anyway. If they REALLY though it was, they would put is in isolation.. and we are not. Everyone is stumped. Um.. cool. Whatever infection it is, is a tough one. Any treatment is going to be hard on my girl. Months of medications that are rough on her organs, weird side effects and have frequent blood work.

The good news is.. it is 100% NOT Cancer..

When I asked, "is this better than Cancer?".. they said, yes. About anything Infectious Disease is better than cancer. Alright, I can handle that.

We need to find the origin of whatever this is, because it almost never starts in the spine. We are looking at her liver and spleen today because that is the most typical. Since we don't know where it came from.. we don't know if it'll come back yet..

Everyone is dying to know what it is. They said Vivian is a very "popular" case. Ohhhh, fun! I'm sure I would love it if I was the nurse.. but not so much as the mom. 

You guys, they are testing her for "Cat Scratch Disease". Like.. she's super abnormal. Haha! God love her!

At this point, we are just going to get her healed from her surgery and worry about the rest later. 

Her foley was discontinued and her output is great. They decreased her IV fluids and today they will discontinue them because she has adequate oral intake. They are lowering her sedation (ya know, from the max dose haha!). They are taking out her arterial line. Whoo! Get all of this off my baby! 

She'll be measured for her back brace Monday, likely, since it's the weekend now. We will be in the ICU until at least Sunday at 6pm (72 hours), but they don't typically move kids out at night to the regular floor so they may wait until Monday. 

Overall, we are doing well. She has intermittently spiked fevers, but nothing too concerning. I can't wait for them to find out exactly what's going on in my kid.. but until then, I'm happy with her progress. Jake and I are doing great. My dad got us a hotel 0.4 miles away so last night I went and got some sleep since I was up for about 48 hours straight lol! Jake is there now napping. I'm not sure if we will utilize it tonight or not. I might since Jake will go back to work Monday and then I will be on duty 5 nights straight. I feel much more capable today. 

Vivian's face is frozen in a frown. I did get one smile from her this morning, but for the most part.. she looks miserable. But she didn't smile at all yesterday, so.. improvement!

We can handle this!!! Pray for good results. Pray for an easy treatment. Pray for it not to come back. Pray for comfort for my baby.