We are 100% going forward with surgery on Wednesday. For those of you who have been following...or haven't been...I'll give you the latest run-down and catch you up.
2.5 weeks ago we did a Modified Barium Swallow Study "just to see" if Ella might be having problems swallowing. Not only did we find out that Ella has problems, she's been aspirating into her lungs for months now. Initially we thought that we would have a feeding tube by the end of the day. Through some doctors and therapists we have postponed Ella's surgery until we knew exactly what we were dealing with. After her second swallow study today (to double check all the issues) we realized that surgery is the best route for the health of our little one. We found out that her biggest problem is her swallow...not her lack to protect her airways. We will be going in on Wednesday to have a G-tube "feeding tube" or a MIC-KEY put in. It's an easy surgery and we'll be in the hospital about 24-48 hours as of what we know right now. Ella will have a full tube in for 6 weeks till the incision heals and they can replace it with a button (picture the device that you blow into when you blow up swimming floats). This is not a permanent device. Once Ella is strong enough to swallow safely then we will pull the tube and let her eat like a "big girl". In the meantime we are looking into something called VitalStim therapy to help Ella's throat muscles learn what they are supposed to do. It's all neurological because of Ella's seizures (at birth) but we have to teach the muscles what they are supposed to be doing.
Thank you all for your prayers as we make these decisions. I have received many phone calls, comments on the blog, and emails from friends (and a LOT of great people I don't even know) to help me with all of our current decisions. Thank you to every person who has reached out to us. I know I sounded a bit down last week...after a weekend of mom's with special needs children, I have been revived and refocused.
Bless you all and your families.
2 comments:
I'm glad you got a confirmation of your decision today. I enjoyed talking with you this morning and hope to meet you in person soon. Each time I look at Ella I see a beautiful miracle and I know that God is going to use this precious little girl to bring Him glory throughout her entire life. You are blessed to be chosen to parent such a precious little one. We will be praying for all of you on Wednesday and we will continue to keep up with her progress.
Praying and Believing God for great things for Ella,
Kristi Cooper
I'm so glad you feel confident about the decision. I will be praying for the surgery tomorrow. Thanks for keeping us updated!
love-katyo
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