Rylan is being released today because there is nothing they can do for her here in the Lubbock NICU. She needs to get to Houston ASAP, but it is not necessary to Life Flight her. They believe even if everything comes back positive for this disease, she is not going to have any major reactions within 24 hours for the trip home. We should arrive in Houston between midnight and 3am, and will see our pediatrician at 1pm the same day, and hopefully metabolic specialist downtown at TX Children's the same day. They said that doctors don't mess around with metabolic diseases, so we shouldn't have to wait too long for an emergency appointment.
Until we meet with the specialist, we really won't know any more about her condition. Everything is so preliminary right now. I will be able to update her condition in the next day or two. It looks like she might have to be on a lifetime diet of no protein (not sure how that works), but there's also medicine she can take that helps 7 out of 10 people prcoess the proteins better. Luckily, her urine does not have the maple syrup smell yet. That's a sign that things are really bad in her system with not breaking down the amino acids. She also tested negative this morning for having ketones in her urine (another good sign).
We are staying postive right now, and thankful we didn't have quite the chaotic morning we were prepared for. Thank you for your prayers. They are coming in from Canada, Australia, and all over the US. I was getting texts until 2am this morning from people. Hundreds of you have e-mailed us/prayed directly for us. For that, we are thankful.
I'll keep you posted on the diagnosis/protocol when we know something. Please continue to pray for her tiny little body to heal from this disease. She has 3 sisters that are ready to play with her.
We're coming home!!!!!!! Praise God from whom all blessing flow!
Casey & Rylan
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