Shay is now back home from hospital and we are no further along with finding out what was wrong with him. As soon as his pain disappeared they said he can go home now. So what was the problem in the first place? some doctors seem to think if the pain has suddenly gone then the child must be better. It seems some in the medical profession get to a certain level in their career and they forget what basic bedside manners mean and what they can learn by listening to parents rather than their noses stuck in the air and pretending to know what is wrong with Shay; when in reality they have not got the slightest clue as even they have to rely on the internet for information on this horrible syndrome.
We were told Shay had constipation/wind then we kindly mentioned that an xray showed otherwise and that everything was normal as it should be. Shay constipated??? if only that was the case. Shay's bowels were soft to touch and his stomach was nice and soft, the only part that was rock hard with Shay guarding himself was around the liver region. Angry is not even able to describe how we feel about it all. Shay is back up at GOSH next week to see his lead metobolic consultant in his care so hopefully he will be checked out more fully than what he was at our local hospital.
He is in alot of pain and is very wobbly on his feet.
Just a quick reminder to everyone as it is so so easy to forget. Don't lift Shay up from under his arms this is extremely painful for him and the poor babe is now refusing to give cuddles just in case he is lifted the wrong way. Shay is so adorable he will now show his port to you so that he knows that you know not to lift him bless him.
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