Samuel Rawlinson
TrachKid Profile
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My son Samuel has had a tracheostomy now for 5 years. He had an attack of croup which meant he had to be ventilated and this led to him having a subglottic stenosis. In addition he has CP, epilepsy and impaired vision so he needs quite a substantial amount of care, as you will be aware.
Update, August 2003 - Sam still has his tracheostomy, and is likely to keep it for life now. He had a gastrostomy tube inserted about 3 years ago due to being unable to eat or drink enough without aspirating. Over the last two years he has had repeated admissions to the hospital with severe vomiting requiring him to be regularly placed on drips. This year his vomiting became so bad that he has had a gastro-jejunal tube inserted instead. This has helped the situation as his stomach now needs to do a lot less work, he is on the waiting list for a fundoplacation (I think you call them a nissen) but his condition has become so unstable that I am not sure he can cope with much more surgery. We are waiting for an appointment with the surgeon to discuss our options. His cerebral palsy has become more pronounced as well, causing tightening and stiffness in his bones and muscles and causing him to have a lot of pain, he now takes regular pain relief (along with a cupboard full of other medications for his various problems). He suffers from a lot of chest infections and over the years he has given us a few scares, in fact he has frightened me witless on many occasions!!!! The doctors don't really know what the future holds for Sam, except to tell me at every possible moment, that he might not now have much of a future.
On the brighter side though, he now has a little sister, who has just turned two (Madison) and he likes nothing better than when she climbs up on his chair and just annoys him. No one can tell me how much longer I will be Sam's mother, nurse and career all rolled into one, and some days I just get so upset, overwhelmed and tired by it all - but every night I tuck him up in bed give him his good night kiss and sometimes he will give me a little smile back, and I know it is all worth it.
Update December 2006: Sam passed away on the 22nd November 2006.
Tricia (Sam's mum)patric.jones@ntlworld.com
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- 32 weeks 22 hours
Location
- Country
- United Kingdom
