Shay took a turn for the worst Tuesday. His breathing was shallow and rapid his cough got worst all of a sudden and his temp reached 39.5 .His heart was racing at 156 and we realised this is the worst we have seen him he wasn't coping very well.
With his temperature we knew we had to get him into hospital immediately. Our local was very efficient this time around and soon blood cultures were taken and IV antibiotics where being pumped into Shay. The blood cultures take 48hrs to come back so the wait began to see whether Shay had a viral or a bacterial infection.
The hospital were unable to stabilize Shay's temperature, it was going between 38 and 39.5. Once the temperature took hold calpol might as well of been water for all the good it done. Neurophen worked to a degree where it kept Shay's temperature from going passed 38 and it was a struggle to keep Shay cool.
To see our little boy shaking and vomiting because he was so hot was absolutely soul wrenching. This went on for two days with the added worry of Shay not eating anything but at least he was drinking plenty of fluids.
He was still on his Ventolin inhaler every 2hrs whether asleep or awake and also through the night which made him even more irritable. His chest was very tight and wheezy and his coughing was making him exhausted. Shay wasn't the boy he normally is even when he is ill. At times he looked disorientated and confused especially when his temperature really peaked. He wasn't the smiley cheeky little monkey that everyone knows and adores, to be in a position where we felt useless and unable to help him made us feel completely inadequate.
Shay is now back home, he got ill very quickly but he got better just as quick. He has had a chest xray that showed his chest was clear and his blood cultures showed it was not a bacterial infection. Shay is still very wheezy so we will carry on with his inhaler for the next week. He also had his 10th blood transfusion while he was in and he coped really well with this. Shay has bought home alot of meds to take over the next week and was given oral antibiotics to take for another week.
The future as everyone knows is very uncertain for Shay. Shay being diagnosed with Pearson's Syndrome has completely changed our perspective on life. We pray that we can keep him healthy and well over the next couple of months. Since the middle of September it seems to us to be one thing after the other with Shay's health. Life is very unfair to our son who's health has been completely taken away by this horrific disease. There is no cure as yet but we will always hope and pray that a miracle will happen for our darling boy. There needs to be more funding for Mitochondrial research and for people to be made aware of Mitochondrial disease. It is an illness that is hidden and you can't always see what is going on until it is too late.
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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