Gracelyn (Gracie, Baby G) was born on October 23, 2014 a 34 wker after a very eventful pregnancy. She is the youngest of 5. All under the age of 8 yrs. She was a typical 34 wker with jaundice and some feeding issues. She was discharged after only 2 weeks! It proved to be much to soon. 7 days later she was readmitted due to a episode where she could not breath due to unknown factors at the time. She stayed 5 days on the pediatric floor in her local hospital. She had a few events there with not breathing so she was ambulanced to Seattle childrens hospital. They ran numerous tests including echo, 2 one hour EEGs, 48 hour EEG, ph probe, upper gi, swallow study, sleep study, pulmonary consults for her lungs, genetic, GI, nuero consults. She had a code blue called ob her after the nurse couldnt get her to breath. She was diagnosised with severe GERD with 2 of the rarest symptoms, sandifier syndrome and laryngospasms. She also has a small hole in her heart, hoping that closes on its own. After 2 weeks she was discharged with a Nasogastric tube (NG). That proved to not be the right fit for her, cause she wasnt able to handle NG feeds. She refluxed and caused her to have a serve laryngospasm, her air way basically locked up. She was ambulanced 2 1/2 hours away back to Seattle chimdrens where she spent a week trying to decide on a new feeding plan. She left with taking nothing by mouth and with a nasal duodenal tube (ND) it feeds past the stomach. At home things were great until her tube had to be retaped. Her system is so sensitive that having to retape it caused her to puke blood and not be able to handle feeds for 16 hours. Which means weight loss. At barley 6 lbs she doesnt have much to loose. Christmas Day she got her finger caught in the tube and ripped it out. She was admitted and placed on iv fluids for 15 hrs until the local hospital was able to get someone to replace it. She left the hospital after one night. She ended up throwing up with blood In it for 18 hrs on and off everytime her feed was started. So between getting no feeds and running on pedialyte that means more weight loss. So the next day she was brought to the local ER and ambulanced back Seattle childrens because her tube had migrated back up. No ALTE episodes of not breathing just a migrated tube and a lil girl with a very sensitive system. She sits on the medical floor now waiting for a better plan for when she is discharged.
Posted on: Tue, 30 Dec 2014 17:36:16 +0000
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