Blakely Janata

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
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Due to Blakely's immune system being compromised and after discussing what is best for her with her doctors - we ask that if you have NOT received your flu vaccine this year that you not visit at this time. Instead continued prayers would be appreciated so we can keep her as healthy as possible. Thanks!
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A quick update about how we ended up where we are: Over the summer we experienced multiple rashes, random fevers, and multiple abnormal blood draws with platelets dropping. Towards the end of August we again had more rashes and platelet drops, then a full body rash which cleared up with some steriods.  All of October we experienced lots of gastrointestinal symptoms including daily vomiting. After frequent doctor visits, ER visits, a hospital stay, and lots of weight loss we ended up seeing a GI doctor at Boys Town. We tried medicine but Blakely continued to throw up so we had an Upper GI Series completed which showed severe esophageal dysmotility and an abnormal course in her duodenum.  We were waiting on an endoscopy and flexible sigmoidoscopy to be scheduled with NG tube placement but ended up in the ER at Children's after more vomiting and Blakely pretty much not eating. We were admitted to Children's on 11/4/17 with Severe Calorie and Protein Malnourishment. We had an NG tube placed, and multiple tests ran including Xrays and the endoscopy and colonoscopy. The scopes looked great structurally and Blakely was tolerating her feedings through her NG tube pretty well. She ended up throwing up again and we had to stop her feedings. They were monitoring her labs extremely close since she was receiving calories for the first time in a while and this can throw a lot of things off. We also completed ultrasounds of her abdomen and a barium enema. She ended up spiking a temperature while at Children's that lasted about a day. From then things spiraled downhill. The biopsies from her scopes did not look as pretty as things did structurally and there was lots of inflammation in the GI tract and villeal atrophy. Her liver enzymes started going up and her protein levels continued to drop. Lots of other labs were abnormal as well. The poor girl has been poked more times than I can count as we are continuously told she has some tough veins. We had changed her IV from her arm, to her head, to a mid line, and finally a PICC line was placed. After placing the PICC line they were continuing to monitor her very closely.  The blood work showing her liver function had changed dramatically and the hospitalist thought it would be best to be near liver specialists and a liver transplant team if needed as it appeared her liver was failing. We were transferred to the PICU at the Med Center about midnight on 11/10/17. Doctors were in full gear upon arrival and worked with us until 3 in the morning and have not stopped since. I will post updates as frequently as I can on this central location. Please pray for our sweet baby girl. She is so strong but has a long road ahead.