Lexi had her G-tube procedure today. We arrived at Nationwide around 10:30. The nurses put numbing cream on her tube site for an hour, hooked her up to monitors and then gave her sedation medication. The doctor then did her mic-key procedure. They replaced her long PEG tube with a shorter tube. Lexi did well and only had some minor bleeding from the procedure. We had to learn how take care of the new tube and how to replace it as-needed, or every 3 months. We're not sure we are comfortable removing the tube and inserting a new one into her stomach! We are hoping we can either have our home-health nurse or a doctor do this! After a trip to X-ray to check the placement of the tube, Lexi was able to go home (around 2:30pm). She is extremely fussy tonight and her tube site is very red and irritated. We are hoping to have her back to "normal" in a few days.
We have all of Lexi's doctors moved over to Cleveland Clinic except 2- endocrinology and cardiology. The pediatric endocrinologist isn't available in Cleveland until July. We are also trying to find a cardiologist that is best for Lexi.
Lexi's therapies are going well. Her swallow study shows that she is silently aspirating, which means she is showing no signs when liquid enters her lungs. This is obviously very discouraging and dangerous for Lexi so we are not giving her any more liquids by mouth. We are, however, trying some cereal and Lexi is taking 10-15 bites. She is also starting to grab for toys, which is very encouraging!
Please pray for:
Lexi as she recovers from her procedure and for Jon and I as we adjust to the new tubes and caring for it.
Easy transitions to Cleveland as our 1st 2 appointments are there on April 8th.
Lexi's feeds. Pray that she begins to develop some coordination with her tongue.
It's hard to believe that the twins turned 18 months today and Lexi will be 5 months on Saturday! She just hit 12 pounds but she is growing!
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