Michael Smith
TrachKid Profile
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On 9/30/02, God blessed my husband Jeff and I with twins, Michael and Madelyn. Madelyn was very healthy and came home with us right away, Michael did not. Michael weighed 3lbs. 14oz. when he was born and was diagnosed with a rare chromosome deletion no one else in the world has. Michael is missing a piece of his 3rd chromosome, specifically 3q21-25. This missing piece has caused my son to have and live with the following medical issues: necrotizing intercolotis, craniosynostosis, hydrocephalus, microcephaly, club foot, cleft palate, Pierre Robin Syndrome, VSD, joint contractures, hypotonia, inguinal hernias, reflux, and BPES (small eyes and vision issues). These many issues have caused Michael to spend the first 4 months of his life in the hospital and have 5 surgeries in the past year: tracheotomy, g-tube insertion and double inguinal hernia repair, bronchoscope w/ tubes placed in his ears and craniosynostosis repair.
Michael survives with the trach to breath and the g-tube to eat. Michael needs 24 hour monitoring and has private duty nursing that does not always happen due to RN shortages. Michael also has physical, developmental, occupational and speech therapy every week. Michael has made great strides developmentally but unfortunately only functions at a 4 month old level. His future is uncertain regarding his physical and mental capabilities. Michael has many surgeries to come next year to hopefully remove the need for his trach and feeding tube. He will have his jaw distraction surgery on January 5, 2004, and his cleft palate repaired sometime after that. We pray every day that these surgeries will be successful and without complications.
Update, Feb, 2004: Michael is doing well. He had jaw distraction surgery on 1/5/03. Update on Michael Smith:
Tracheostomy - October 15, 2002
Feeding Tube & Inguenal Hernia repair - November 21, 2002
Craniosynostosis Repair - September 10, 2003
1st Jaw Distraction Surgery - January 5, 2004
Eyelid Surgery - March 19, 2004
2nd Jaw Distraction Surgery, Bronchoscopy, Larynxoscopy, 2nd set of Ear Tubes - May 6, 2004
Cleft Palate Repair, Urological Surgery, Jaw Distraction Removal and Eye Granuloma removed. - September 20, 2004
Bronchoscopy, Larynxoscopy - November 2, 2004
Bronchoscopy, Larynxoscopy - April 6, 2005
DECANNULATION: Tracheostomy is out!!! April 7, 2005
Jeff & Mary Jo Smith
History
- Blog
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- Member for
- 3 years 35 weeks
Location
- Country
- United States
- State/Province
- Illinois
