What a Day

Last night Lucy started vomiting. It was just a few times and she always came back to her "self" (baseline), so we thought it was just a fluke. But overnight, her residuals were really bad, which means that her feeds weren't going through her little body. Thankfully, Nurse Valerie was here and was able to stop and start the pump and take extra care of little Lucy, who also started having an increase in seizures.

This morning, Lucy was very tired. I kept her on continuous feeds (on the feeding pump), and thought she was just worn out from last night. But then she started vomiting non-stop, projectile, and dry-heaving. When she wasn't doing that, she was listless and extremely lethargic. I've never seen her so out-of-it, and it reminded me so much of Ellie Kate's illnesses. It scared me, and after talking to her doc, we decided to get her to the ER.

This ER visit was virtually perfect. They took us right back and knew who we were, even though Lucy hasn't been there often (Ellie's reputation lives on and her experiences help Lucy!). Since Lucy was having a lot of seizures, they hooked her right up and accessed her port immediately (thank you Lord for the port access!).

After two boluses of fluids and time with maintenance fluids, Lucy started to perk up. She also had some IV anti-seizure meds as well as zofran for nausea. Once she tolerated pedialyte and had a wet diaper, we felt more comfortable in going home rather than being admitted. Since we have home health, the doctors felt super comfortable letting us go home.

So, here we are! Lucy isn't lethargic anymore, which is a HUGE blessing. She isn't tolerating formula but is doing great with her pedialyte. We hope that she will SOON be back to formula. She just has to get back to her feeds quickly.

It's been emotionally draining, as this is the first major time we've gone in for GI issues with Lucy. It's so much like what Ellie used to deal with, and that is scary. We don't want to repeat history and it's hard not to wonder or worry. Our time with the specialist in Houston can't get here fast enough!

Thank you for jumping in and praying for us. Thank you too for all of the calls, texts, emails, and posts on FB (isn't FB a wonderful way to know how to pray??!!). We love and appreciate you all so much.

Ryan