The good...
Lauren had a great check up at vent clinic...She had a great lung x-ray and perfect blood work. They dropped her vent rate to 14 and next vent clinic (March 24) they will run a "trach trial" where she take her off the vent for 15 mins to see how she does. After that we can do this for 15 mins 2x a day...I'm SO excited! Lauren will get to go UPSTAIRS! Or maybe even outside without dragging the vent around. Then in April the time off the vent will increase to 2 hours! the doctor said she expects Lauren to be fully off the vent within the year!
The bad...
Alex has been getting worse again with drinking anything :( Today he drank a total of 3 oz but he eats fine...after much consideration and much struggle we've decided to go ahead with a g-tube. He have a pre0op on Tuesday. I'm been having bad anxiety about Alex going abck to the hospital for surgery. I knwo in the long run this is what is best for both me and Alex. I won't stress about him hitting his volumes everyday. But part of this does feel like failure to me. It feels like if I could have just figured somthing out then that sweet boy would not need surgery. In addition, Alex got a REALLY bad haircut today. I'm going back tomorrow to see if they can "fix it". The pic is before the bad haircut.
What wonderful news for Lauren! Just being able to go upstairs and outside will be such a big deal for her, a new world to explore!
ReplyDeleteSorry to hear about Alex. Mom's know what is best so be confident in yourself and your decision :)
Perhaps taking him yourself would help.
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