Jon and I have been very busy trying to make some very important decisions for Alexis. We received the results back of her echo from Monday and the narrowings in her aorta are still considered "mild" so no further heart surgery is needed in the very near future. (Thank the Lord!) We had another new Cardiology Attending start his rotation yesterday so we have received another new perspective. After speaking with the neurologist yesterday and this morning, we have decided to have an EMG done tomorrow for Lexi. This procedure will put very small needles onto her face and send small shock waves through the nerves and muscles to determine if there is any permanent nerve damage to the 7th cranial nerve. While painful, this test will last about 15 minutes (if Lexi "participates!") and we are praying it will give us some answers. I am also meeting with the head of the neurology department, Dr. Roach, tomorrow. We are hoping that this meeting (and his examination of Lexi) will give us some much-needed insight!
Finally, we are unfortunately going to have to pursue Lexi moving to a permanent feeding tube called a G-tube that will be put directly into her stomach. This has been an EXTREMELY difficult decision for Jon and I to make, but at this point, Lexi is not taking anything orally and cannot remain on the nose feeding tube for an extended period of time. The test from Friday showed that Lexi's stomach is positioned a little different than most peoples'. While this is not a health risk, it does pose more of a problem for them putting in a G-tube. (We have come to the realization that Lexi likes to be very "perplexing!") In order to have the G-tube put in properly, Lexi will most likely have to under-go an additional surgery. We will know more after speaking with the GI surgeon tomorrow.
Specific Prayer Requests:
Please pray for Lexi's EMG and meeting with Dr. Roach tomorrow. Pray that BOTH will give us some much needed insight! Pray also that the results of the EMG will show no permanent nerve damage on Lexi's face and 7th cranial nerve!!
Pray for Jon and I as we are trying to decide about Lexi's G-tube. We are hoping the GI surgeon will be able to find a way to do the procedure through radiology and with minor sedation (which is how it is typically done) instead of having to put Lexi through another surgery and back on a ventilator!
Pray for progress with Lexi's feeds. Even if she is put onto the G-tube, we still need her to make progress with oral feeds so we can get her off the G-tube ASAP!
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4 comments:
All I can say I have said before...I can tell this is weighing heavily on you, but GOD knows his purpose for LEXI and will give you the strength to get through it all. I wondered about the g tube. Does that then give you the opportunity to bring her home and get local therapy, or is the risk of aspirating still an issue. I am praying more than ever and hope that you can be at peace with your decisions.
GOD BLESS
Kim
Ran into Amy last night at Walmart. Sorry to hear that you're not seeing any improvements. Praying God will give you wisdom as to how to proceed from this point. Still praying for a miracle that you're home for Christmas.
Jon and Cherie - My heart aches every day when i read your blog. i've been sharing it with my co-workers so they too will pray. THis is all so complex...I know God is with you - may you feel is PEACE always....as you make decisions. Love you, Marcia and Karl
Lexi - We have already seen the fighting spirit in you and know you will continue to fight hard in your recovery. You have an awesome mommy and daddy who love Jesus and your entire family and lots of friends are praying for you. We pray that you will cooperate with the testing tomorrow and help show those docs what to do to help you come home!
Hugs and Kisses,
Aunt Amy
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