DevynnsMommy
TrachKid Profile
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Devynn was born full term on March 22nd, 2009. We had know about her heart defect since November 11th, 2008. During open heart srgery when she was 3 days old, the surgeons damaged the phrenic nerve. This nerve controld the diaphragms. She was unable to breathe on her own for 9 weeks. She was intubated for 4 weeks until her doctors decided to do a trach and g-tube. After she came of the vent, they tried to decannulate but were unable. They told us to give her 6 months and she should be strong enough. Although, after 3 months they thought she was strong enough. They once again tried to decannulate and failed again. On January 21st, 2010, they did exploratory surgery, bronchoscopy, laryngoscopy and upper endoscopy (to determine why she vomits 4-9 times a day). The only thing they found was that her tongue falls back and her lungs are somewhat floppy during rest and crying/anger, etc. 2 weeks after her open heart surgery, she also had a seizure/stroke, they then notiiced that one side of the brain was significantly smaller then the other side, and also had a non fluid filled cyst on one side of the brain. No other seizures have occurred.
These days she is struggling with physical, occupational and speech therapies. She is unable to eat anything by mouth that has any nutritional value and nothing by spoon. I stay at home with her as I do not have anyone else who can fully care for her.
Regardless of all these issues and struggles she has had, she is by far the happiest baby most people have ever seen, and they tell us so! Her father and I are very proud parents, and she has a large extended family who is also very proud of her!
History
- Blog
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- Member for
- 26 weeks 6 days
Location
- Country
- United States
- State/Province
- Maine
