Happy St. Patty’s!
Okay week update take #2, first draft crashed right before I posted. Here’s a briefer version:
Miss Lydia has been extubated for a week now and is doing well on a nasal cannula. She developed another pleural effusion with lymph fluid so she has another chest tube and has not had any feeds. She’s back on IV TPN and today they started Enfaport formula via the Gtube at a whopping 5ml every 3 hrs. She’ll have to be on that for at least a month before going back to breast milk. We’re not crazy about her spit fistula and the ostomy bag at her neck but at least she doesn’t need constant suction and for the first time doesn’t have anything in her mouth. At the moment, we’re speaking with Dr. Foker who developed a technique used at Boston Children’s to stretch the esophagus for a primary repair versus waiting a year or two and pulling her stomach up. So there may be a Boston road trip in our future, we’ll wait and see what unfolds… Unfortunately, my home by Easter date has been postponed again.
Here’s some festive pics of the crew. Lydia with her red fuzz in the back has the most noticeable Irish roots!
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