Keech Hospice stay

Shay has just had a nice visit to Keech Hospice, a fantastic place where he has fun, and can forget about him being different to others. The nurses adore shay and he has them wrapped around his little finger, he will also do whatever they ask. If a nurse says jump, shay will jump for them.
As normal with any hospital stay shay will laugh at the bed I have to sleep in, well on this occasion he laughed more than normal.

As normal with any hospital stay Shay would laugh at the bed / chair I would be given to sleep in. Well on this occasion he laughed more than normal.

I cannot say enough about how good the staff were. Shay had a nurse with him all the time. They all spent time with Shay, wrote his notes up, played numerous types of games with him and games he would not normally play. It was just nice to sit back and watch him have fun and play, be like child without anything hooding him back. 

The first nights sleep was not a good as it could have been, he was awake for some hours, asking for his Ipad every 15 minutes. The second night he slept so well, even slept until 730am.

The day we left, within seconds of leaving the hospice, he started to complain of his headaches. To me this just showed how the hospice managed to make him feel special and important.

The first day after his stay, he is complaining of pains in his muscles, all the muscles he used over the weekend.

What a special weekend for Shay. Now back to school which he adores, time with his friends.

Update so far this year March 2017

Shay has had a busy year so far, a Lumbar Puncture at the start of January, this was due to his stroke like episode. He has seen a Neurologist, ophthalmology, endocrinology, gastroenterology team, palliative care team and a appointment with his local consultant.

We are awaiting the results from the Lumbar Puncture, this is important as this will help tell us what medication needs to be increased to try and help Shay. Whilst having the lumbar punch shay had numerous consultants  pop into see him. As a result of this we had short notice appointments with the consultants from neurology, gastroenterologist and endocrinology. The consultants have been very good, they all mention that the treatment is supportive. The gastro consultant was brilliant and shay took to him, they spoke for ages about football before mum and dad could speak. This doctor arranged for a day of tests which happened last week, so awaiting the results from this, GOSH send the tests to a outside company.

The ophthamology was what we were expecting, his sight has deteriorated again, this appears to happen every 6 months. He has been diagnosed with night blindness.

If you follow this page you will get notifications of when the page is updated. We have recently started a Facebook page called Buildforshay, this has been started to raise awareness of his syndrome, along with charity events to help raising money for a palliative care suite for Shay.

If you have any questions please comment/ email and I will get back to you.