Sasha
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- Age: 1 Year
- Trach Date: April 12, 2000
- Location: Orange county, CA
- Sasha's web site : http://calmet.com/sasha
Medical History:
Sasha was born weighing 1 pound 11 ounces after approximately 25 weeks gestation. Her biological mother did not receive any pre-natal medical care. Her severely premature birth has lead to several medical problems, some of which are not fully diagnosed at this point. (i.e. possible cerebral palsy, metabolic disorder). Her birth records indicated that her prognosis for survival was "grim".
She was discharged from the hospital without medication or any medical equipment on December 21, 1999. When she arrived at our home at age 3 months she was unresponsive and lethargic. Although she was able to feed reasonably well, she had respiratory stridor and severe eye problems. (ROP Stage III).
She progressed satisfactorily for 3 months, gained weight, her eyesight improved, and she became increasingly responsive. Since December, she has had medical appointments almost every day. She was also diagnosed with left vocal cord paralysis.
In late March our family developed flu-like symptoms, which eventually affected Sasha. We took her to the doctor on Friday, March 31 and again the following Monday, April 3, because she wasn't eating and drinking properly. On April 3, she was hospitalized at CHOC, for dehydration. After 24 hours on IV, she seemed better, but, later that week, she was diagnosed with pneumonia. She was put on a respiratory ventilator. After unsuccessfully trying to wean Sasha off the ventilator twice, doctors performed a tracheostomy, because of subglottic stenosis and Sasha's’s failure to breathe on her own after extubation.
She was hospitalized for a total of 7- weeks during which time we spent each day with her, learning about her medical care and supporting her through this difficult experience. We were trained on trach care and learned about many other possible medical difficulties that these low birth weight children may develop. Not having had a medical background, we have both learned a lot spending so much time with expert medical staff at CHOC.
Since her discharge on May 23, Sasha has made significant progress in her physical and mental development through this first year. She is alert, social, and very responsive to the sights, sounds and touch of others. Her prematurity shows in her inability to sit up for more than a few seconds, her inability to hold the bottle consistently, and low motor skills.
Presently, Sasha's care requires 5 therapies per week, 2-3 doctor appointments per week and countless hours on the telephone with doctor's offices, health insurance, regional center, medical supply company, pharmacies, and social services. We maintain regular contact with five doctors: pediatrician, ENT, Pulmonologist, neurologist, developmental clinic and apnea clinic.
Update: December 2002 - Our family major event of the year was Sasha's decannulation on December 5.
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If you look at the ornaments, you should be able to see a trach tube, ties, passy-muir valves, and some suction tubing.
Best withes for a happy holiday season, and thanks very much for maintaining a very informative web presence. I have frequently referred to the page for information on medical procedures, as well as exchanging thoughts with other parents.
Cheers
-Vijay
