Shay was admitted to Watford general Monday afternoon. He had a cough which can only be described as dry and slightly annoying for Shay. His temperture zoomed sky high and when it reached 38.9 we decided he needed to be admitted. We are getting so use to running around packing bags for our little man now; but this time knowing he would more than likely be spending the week rather than a few hours in hospital.
The Doctors and nurses who are all gradually getting to know Shay by sight have been fantastic. The care Shay has received has been outstanding. The hospital knew exactly what to do and in a matter of minutes they accessed Shay's port and had an IV antibiotic drip up and running. Blood was taken to culture which took 48hrs for the results to come back, this showed that Shay had a viral infection. We also discussed the possibility of Shay going on Tamiflu. Tamiflu for Shay would only shorten the illness by 24hrs and would in fact make him feel lousy. As Shay's symptons were only a a high temperture, slight cough and a snuffly nose it was decided not to give it to him as he was coping so well.
Shay's Hb levels also took a nose dive along with his neurophill and platelet count. He has had another red cell transfusion which this time around he fell asleep!!!
So after a very long week for our little boy he is now back home and it feels great to have him in his bed sleeping like the angel that he is.
Hb - 8.4
Neurophills - 0.05
Platlets - 58
WBC - 2.77
About Me
- Shay
- London, United Kingdom
- Welcome to Shay's story and thank you for taking the time to find out how Shay is doing. It is a place to share our hopes, sadness and the happy times that our little man has. Shay in April 2008 was diagnosed with Pearson's Syndrome a Mitochondrial disease with no cure. Pearson syndrome is very rare, less than a hundred cases have been reported worldwide. It characteristically present in early infancy with pallor, failure to thrive, pancytopenia and diarrhoea. Additional manifestations often include progressive external ophthalmoplegia, proximal myopathy with weakness, and neurologic disturbances. Multiple organ involvement is quite variable. Most infants die before age 3, often due to unremitting metabolic acidosis, infection, or liver failure. Those few individuals who can be medically supported through infancy may experience a full recovery of marrow and pancreatic function. These children eventually undergo a transformation from Pearson's syndrome to Kearns-Sayre syndrome with the development of ptosis, incoordination, mental retardation and episodic coma. Life as we use to know it I cannot remember. We have to live in hope that a miracle will happen for our son.
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