We are all glad that the weekend is now upon us. Shay has been through so much this week and at times totally heartbreaking to see our son in absoulte agony.
Shay had his transfusion today a day earlier than expected. He's had a very rough day and it has been the worst day by far. Our poor babe had so many needles inserted into his arms to try to put the cannular into a vein. Shay's arms are black and blue with the failed attempts at one point he was screaming saying "oh dear, oh dear, Mummy Mummy". To see your son going through so much pain and distress is completely soul destroying it breaks your heart.
Shay also had a failed blood test yesterday as his veins have given up. Today was exactly the same in the end they managed to put the cannular into his foot which meant he sat for over four hours while being transfused. The doctor was fantastic and kept apologising to me and she talked to Shay throughout the procedure. To make matters worst half way through the transfusion Shay was showing a reaction to the blood with tiny pin pricks spots up his arms, trunk and face. He didn't have a temp and his blood pressure was fine it was just the rash. Shay has now recovered from this and is now sleeping like an angel in bed.
There really isn't another child like Shay, everything that is thrown at him he just keeps on coming back stronger and stronger. It makes you realise what a very special boy we have and how lucky we are to have two wonderful children who are alway's a joy to be around.
Blood results;
Hb - 6.7
Neurophills - 0.36
WBC -2.64
Platelets - 126
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.
No comments:
Post a Comment