Matthew Hyland
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Matthew, my son has now had his trachie for 7 weeks (from 2 September '99), and it looks set to stay longer at the moment. Matthew is eight and a half years old, and has Down Syndrome, Klinefelters Syndrome, Infantile Spasms and uncontrolled epilepsy, and left-sided hemiparesis. In February this year he underwent a spinal fusion operation, as the C2 vertebrae had slipped forward 18mm, although the surgery went well, they were unable to pull the vertebrae back into line. Through August Matthew started losing function in his arms and trunk, and finally a diagnosis of spinal compression was made following a myelo-CT scan. Two days later he underwent an 11 hour operation that has completely restored his neurological function, but has left Matthew unable to swallow, and with a tracheostomy and gastrostomy. The ostomies were to have been temporary (4-6 week) measures, but as I mentioned he is aspirating everything in his mouth, and his trachea collapses when the trachie tube is removed. Matthew has just come out of his first bout of post-surgical pneumonia: should he not regain swallowing ability and a planned pH study show significant gastric refluxing then we are headed for a fundaplacation procedure.
- Update for the new year!
Matthew had the trachie tube removed successfully in mid-December. Wonderful news and a great Christmas present for all of us. Now it's a long haul to wean him off the gastrostomy.
- Regards, Fiona and Gerard Hyland
