The Brayton Project
Some of you may remember my prayer requests for Brayton, a 3 year old who sadly lost his life due to complications from a recurrent tracheoesophageal fistula 2 months ago. His mama has started the Brayton Project http://thebraytonproject.org/ as a site to promote awareness to EA/TEF and the families who go through this rare and treatable condition. Check the site out, see the sweet face of Brayton who touched the lives of so many he never met and note the really cute baby featured on the November families page.
Miss Lydia has a fairly decent week even though she tried to create a bit of drama with some brief heart arrythmia issues and a fever. She now has MRSA in her trach (and will likely be colonized with it for the long haul) and developed a staph infection in her Broviac line. It came out and now she’s back on IV antibiotics through 2 small IVs. Hopefully they’ll hold out a couple more days and then the meds can be switched to her feeding tube. We’re hoping she can then stay IV access free for awhile. She’s also still healing from 2 rather nasty head pressure wounds that developed from her cranial helmet. We may just throw in the towel on the whole round head goal and accept she’ll have a perma flat head. I’ll just start buying more cute hats, giant flowers and get her a bump-it when more hair comes in. We’re still creeping toward our home date goals and I’m still holding out hope that she’ll be home for the big #2 birthday.
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