So it looks like we will be spending a few days in the exciting city of Lubbock sometime in the next couple of weeks! No, no....not for vacation....we are headed to the hospital!!
Lily had her appointment yesterday with her pedi gastro doctor. After reading over her history since he last saw her, asking me a million questions, seeing her tiny size and getting insight on her "blue episodes"(more than likely being caused by aspiration), he came to the conclusion that medicine alone for her reflux is not doing the trick. Most kids are supposed to outgrow this by the time they are one and Lily's only seems to be getting worse. We have been uping the dose of her medicine to match her weight and she is at the max dose but is still so uncomfortalbe, especially at night, not gaining any weight and not eating.
We are not sure of the dates yet but more than likely we will be headed to Lubbock one week from today. Lily will be admitted to the hospital and several tests will be performed under sedation. She is having an esophageal scope and biopsy done to check the anatomy and condition of her esophagus and to make sure there isn't anything else going on. She is also having a ph probe placed at the opening of her stomach that will monitor her reflux episodes and measure the acidity of the fluid that is coming back up. It will be attached to a tube that will come out of her nose....and this is supposed to stay in place for 24 hours. We are hoping and praying that everything goes well and that we get some answers!
I am so torn with all of this. I hate seeing Lily hurt and I know we need to do SOMETHING for her reflux but it also breaks my heart to think about her going through all of this. Please join me in praying for painless procedures for her and peace for me!
Lily just woke up so I am off to get my sweet baby!
One more thing!! Stellan is having heart surgery this morning...as we speak...please say a prayer for him, his family and the medical team involved in his care! His button is on my sidebar if you want to read about his story!
Park City Utah
2 years ago
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