Mondays always seem to be the day to "get things accomplished." After slow weekends, this is always encouraging. I was able to talk with the doctors today and we changed Lexi's formula to the most sensitive formula offered. Hopefully this will help with some of her constant crying (we're praying it is so!). I was also able to speak with the anesthesiologist that actually did Lexi's surgery. He is certain that her neurological symptoms are in no way related to anesthesia, which goes against everything the nuerologist were thinking. So, the neurologist are now looking into other possible causes/diagnosis for Lexi's cranial nerve issue. The best news is that Lexi's gag reflex has returned again! We will just pray it stays around this time! This means that tomorrow we will again begin oral feeds! We have also requested a "Care Council" where all the physicians of all departments involved in her care will sit down with Jon and I and discuss Lexi's current situation. This should occur later this week. We are hoping to get a much better "game plan" at this meeting!
Specific Prayer Requests:
We are asking for continued prayer for Lexi's constant crying. Pray that this new change in formula might be the answer!
Pray for continued wisdom for the doctors. There has been some discussion about Lexi being transferred to the neuro floor. Pray for wisdom for Jon and I as we decide if this will be the best situation for Lexi's care.
Pray for Lexi's gag reflex to stay put this time! Pray also that her oral feeds go well this week so we can attempt the swallow study test again!
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4 comments:
AMEN AMEN AMEN and I think the group meeting is GREAT!!!!! and I believe nuero floor is a good idea too since that seems to be her issue now. THANK GOODNESS FOR GAGGING!!!
Cherie & Jon, I am on the praise team at Mt. Zion, working with your dad. I check your website and pray daily (usually several times) for Lexi, you guys, Ally & Libby as well as the rest of your family. God will see you through this, as you already know. This is a really hard time for you, but know that you are uplifted by many.
Ginny Amos
Mt. Zion U.B.
I continue to read up on Lexi... I will keep her, the doctors and you and your family in our prayers!
Cherie,
Your aunt Catherine works with my mom at Cooper. She told us all about Lexi and what you have been through. She also gave your information. I wanted to reach out because I live down in Columbus and my son was born with severe aortic stenosis (he is now 4). We were in and out of Children's for procedures, visits, etc. It is a fantastic place and Lexi couldn't be in better hands. Anyway, I wanted you to know that if you need anything (especially to vent to someone that knows what you are going through), please let me know. We are all praying for Lexi, you and your family. My little ones have added you to their bed time prayers as well.
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