Shay was extremely distraught yesterday when they were trying to put his cannula into his vein for his transfusion. Shay did have his magic cream on but as we were waiting quite a while the only explanation we can think of was that the numbness wore of quicker than expected.
I can't put into words how it makes you feel when you see your child going through this amount of pain. As parents we should be there to protect our children from pain and suffering we felt like we failed Shay yesterday. Yesterday has been the worst day by far for Shay and the cuddles we get afterwards from him is just so amazing. This truly is unconditional love from our son and his cuddles are so precious to us and especially to his sister Chrissy who absoutlely adores her little brother.
He was screaming hysterically as his veins have literally collapsed with the amount of needles our poor darling boy has to endure. After a very traumatic 40 min with countless attempts and the nurses,doctors failing (which isn’t their fault) they finally managed to insert the cannula into him. Shay has been left with many bruises in his arms, wrists and feet.
Enough is enough now, with what he has been diagnosed with he shouldn’t have to put up with this kind of distress and pain just to get a needle into him.
The support at our local hospital has surprised us and they also think Shay would benefit from having a central line inserted into him. This would enable Shay’s veins to recover if he had this. This would be done under general anaesthetic and would take away the unnecessary distress Shay is now experiencing.
A Port/hickman does not come without its own problems. Shay is neutropenic meaning he cannot fight infection; having a port/hickman inserted really is a last resort for Shay as the site of the port can easily become infected.
Next week we are going to seriously look into Shay having one of these as I feel the time is coming very close for something to be done.Especially with his recent diagnosis does he really need this additional pain and stress to deal with? we don't think so.
There are also drugs that some take to encourage the red cells to grow and we are going to discuss if this is also an option for our little man.
Today Shay has been enjoying watching his sister Chrissy Irish dancing at a feis; he is back to his normal self after the transfusion and it is absolutely fabulous to have him back laughing and smiling and being a very cheeky monkey.
A friend’s husband at the feis saw Shay and her husband said to her (not realising that she knew Shay) what a lovely happy little boy he is. She told me that he was shocked when she said that’s the little boy who is seriously ill. When you hear things like this it hits you like a ton of bricks what is wrong with him is completely hidden which makes it extremely hard for us to accept that he is poorly.
Results from 4/6/09;
Hb – 7.7
Neutrophils –0.47
WBC –3.25
Platelets - 122
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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