This post was originally posted on my Fridays With Lorelei Facebook page along with several other updates. Tune in there for additional updates. There were a few important updates on her Facebook page between this blog post and the previous one… like the one when she was extubated!!
Yesterday Lorelei slept the entire day. Around 430 I asked the nurse to check her labs (wasn’t supposed to be due for 5ish more hours) to make sure there wasn’t a crazy reason she was sleeping. When the labs came back consistent with her previous, I decided to finally just force her to wake her up. (Which is something I never do but this kid had slept almost 24 hours, through multiple respiratory therapies and exams. I needed to see how she would behave. I needed to see more than her eyes reacting when I shine a light in them.)
For about 15 minutes Lorelei was weak, but so incredibly happy and so much more like her quirky self. I got to hold my baby for the first real time (not counting when she was intubated and completely drugged) since that time I thought it would be the last time I held her. Talk about feeling ALL the feels.
I think she enjoyed those 15 minutes as much as I did. But then she passed out, hard core. Her body is weak. Much weaker than her previously low toned body had been. So hopefully more sleep will help. Assuming her mitochondria continue to play along, we appear to be going in the right direction. Thank you Jesus.
I left the hospital for a bit yesterday when my mom drug me to dinner at Jason’s Deli. As I sat at my table, I listened to people around the restaurant cough and hack their way through their meals. One guy was sitting at the table next to the salad bar… he would cough every few minutes. Every time I cringed. I’ve said it once and I will say it again: if you are sick, stay home. Sure, I don’t know Salad Bar Man’s situation… maybe he isn’t contagious, maybe he has a chronic coughing issue, maybe he has a rare underlying condition that causes excessive allergies and secretions. But if you’re sick or recently have been sick, JUST.STAY.HOME. Order food in (or amazon prime whatever it is that has you aimlessly wandering around Target) and keep your germs to yourself. Catching the common cold or even this dreaded flu may not be a big deal to most, but it is life or death for others.
I have lived in the PICU for the last 17 days. (And I haven’t been home in 25 days because of work and the holidays.) My mom dropped me back off at the hospital last night and it was the weirdest feeling. I walked past an overflowing ER of very sick, coughing kids. I walked past a new admission, knowing that this is “the worst day ever” for those parents. I walked past several PICU rooms where I know of families who lost their children in the last 17 days alone. When I rounded the corner, I was thrilled to see my kid, my husband and one of our favorite nurses in our not-so-cozy room. I was back in our safe little hospital room. The room that I almost lost my baby in. The room that I was generously gifted a few more precious smiles from Lorelei in yesterday.
We have been holding off to see if we can get medical transport home… and quite frankly I don’t think it will be happening. I spent most of yesterday trying to figure out our options. But her “15 minutes of happy” yesterday make me more confident in taking the 12 hour drive. After we flag every children’s hospital up the east coast that is…
So stay tuned y’all. God is good and this little girl isn’t done writing her story.
