Hi Friends (:
We are out of the PICU, and back up to the 5th floor. More importantly, Evie has been off of oxygen since 8am, and her levels are staying good and stable! This is the first step toward going home. They also let her bottle feed a little, and put the rest in her tube. She sucked it down like a pro, so hopefully they will let her take more and more bottle, and less tube feeding.
Evie is getting a picc line put in her arm tomorrow, to finish a set of antibiotics. There were some white blood cells in her spinal fluid from the spinal tap, so they are treating for meningitis even though they don't think she has it... it's a precaution they always take until her cultures come back normal, which takes a few days. Once she is cleared they will stop the antibiotics.
We have an unconfirmed diagnosis that the geneticist and neurologist are looking into... it involves Evie not having an enzyme that she needs. With the missing enzyme her vitamin B6 levels get low, which can cause seizures. She has been on doses of B6 for 2 days, and hasn't seized since, Praise God! There is one experimental drug that is in the second phase of testing that our geneticist is looking into. We obviously have to weigh the benefits and risks before considering it, but it is something we are checking out.
Prayer Requests: Evie would stay stable, and without seizures. That she will be able to take a full bottle soon, so they can remove the nasogastric tube that they are feeding her through, and that her oxygen stats would stay good so we can GO HOME. I am praying praying praying that we can go home tomorrow, but they may have to watch her picc line for 24 hours, which puts us at Friday. Not only is it hard to be here, but I sure miss Lyla. She is a little "off" from us spending so much time here, and it would be so nice to get things back to normal for all of us.
Thanks friends, Love you!
Lindsey and fam.