Thinking of Jonathan with a smile

It's hard to believe that it's only been a week without our little boy. It's been a difficult week, particularly given that we've had to go back to the hospital to deal with the paperwork and have also had to make arrangements for the small thanksgiving service we're having for Jonathan at the crematorium tomorrow.

We have however been so comforted to continue to receive such great support from our family and friends. Thank you from the bottom of our hearts for your love, encouragement and prayers - we wouldn't be able to make it through all of this without them.

We miss Jonathan so much and are sad to be apart from him but we have such happy memories of him. The above photos are just a few of the many photos that never fail to make me smile - hopefully they will also help our family and friends also missing him to think of him as the happy little boy who brought us all such joy!

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Our little Jonathan

Email to friends today:

Hi friends

Sadly our little boy passed away last night after putting up a brave fight against all odds.

We are so thankful to have met him and spent these last few months with him.  We will miss him lots but we know that he is in a better place, away from all the poking and prodding that he has had to endure.

Thank you all for your support, thoughts and prayers - it has meant so much to us.

Love 

Chris & Tracy

The Royal Wedding from St Thomas'

Little Jonathan's playing a bit of a waiting game at the moment - we're still waiting for him to pick up on his breathing so they can remove the ventilator, and also waiting for him to start digesting his gastric fluids so he can be fed.  Until then, he remains on the ventilator, and is still being fed only by the long-line in his arm.  Right now, patience seems to be key...

The whole ventilator situation is a bit tricky - although it causes him a bit of discomfort and he needs to be sedated while he's on it, they don't want to take him off it too soon in case he can't cope and needs to be quickly put back on it again.  The doctors are waiting for Jonathan to show that he can breathe on his own, but the ventilator tube causes a lot of gunk to build up in his lungs which makes it hard for him to do it himself... the gunk gets suctioned out every few hours so he's able to breathe a bit more easily then.

Yesterday he had a not-so-great blood gas reading which meant they had to turn up his ventilation.  That was really frustrating to us as it seemed he was heading in the wrong direction.  It left us a little down when we left the hospital, but today, much to our relief, he had a better reading and so they started turning it down again.

Apart from just trying to cheer him on to get him breathing on his own, frustratingly there's not much Tracy and I can do to help with his breathing - two and a half weeks on the ventilator is two and half weeks too long, as while he's on the ventilator, it also means no hugs!

Anyway, in other news, Jonathan did get to enjoy the Royal Wedding from his bed in St Thomas' hospital, which is just across the river from Westminster.  Although he was sound asleep for the whole thing, he was able to hear the wedding bells, and if he'd opened his eyes, he would've seen the fly-by go past his window...