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.
That is WONDERFUL news. We will continue to keep you all in our prayers.
ReplyDeleteIng, Laura, & David
I've been praying for Lyla. It's really tough for the kiddos left at home, especially when it's a tough situation for Mom & Dad, too. Glad to hear the pic line will be so temporary, and I praise God with you for how Evie is improving! You guys are doing great! No mom or dad could have been more perfect for Evie than the ones God chose for her:)
ReplyDeletePraise God for His goodness! We'll continue to pray for healing and permanent trip home soon!
ReplyDeletePatti and the family
Woo hoo! That is some great news! I am so glad to hear that Evie is doing much better! We will continue to pray for her and you all! Hopefully it won't be too much longer until you can bring her home again and they find a diagnosis! Many hugs to you and prayers said!
ReplyDeletePrying for you all. God is good all the time in all circumstances. He is carrying you when you don't feel like it. Enjoy every second that you have her for and may God grant you the desires of. your heart. May the Holy Spirit lead you into God's desires.
ReplyDeleteWe love you guys and if you need anything that we can help with please know Carol and I will do anything you need us to do. Call if you have any questions or need anything. Cell #658-8038
Lindsey, thanks for the updates. I am constantly checking on little Evie's status. And keeping you all in my prayers:)
ReplyDeleteEvie this is for you - show those around you the strength you have been given because you are very special to all of us. love you so much.
ReplyDeleteTruly a blessing to hear that little Evie is doing better. Praise God for no seizures in the last few days. Continued prayers for healing, getting home soon and precious family time. Love to you all!
ReplyDeleteI second that statement: "No mom or dad could have been more perfect for Evie than the ones God chose for her:)". Amen to that!!!!
ReplyDelete