Ed’s Blog Post
This morning we had a visit from our GI doctor who just so happens to be on service this week. There are so many details still to be worked out with taking home TPN, but it was good to talk it through with her. She did get a commitment from an intestinal failure team dietitian to help her with overseeing Aimee’s nutritional care. More discussions about either a PICC line or a Central line on her chest, but something the GI doctor brought up was to consider what if things regress and we can no longer give her medications enterally. It’s a little worse case scenario, but I would hate to switch to a central line with a single lumen just to have to change to a double later because we hadn’t considered this. Aimee currently has a PICC line that has two ports and the Central line we have been discussing would only have one port, which would make giving meds through it more difficult and limiting. More things to consider ….
On a happier note, Rosa and the kids got to come down and spend the evening with Aimee and I! We painted decorations for our tiny tree, put up Christmas decals on our door, drank hot chocolate, and watched Elf!
It was great to have everyone in the same room at the same time. I wish this felt more normal. To be all together. Even to be questioned at the security desk whether we could all come in felt annoying. I didn’t have to get Papa bear on them or anything, but I was ready if need be. It was hard to have them all pack up and leave. I’m ready for us to all be home.
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We love to read your comments and encouragements! Messages to Aimee are always welcome too. I will definitely read them to her. :)
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