Maeve and Will in the ICU waiting room earlier this month.

Email from Rachel, Sunday 22 July at 7.44 pm:

Hi all,

Another week has gone and Matthew is doing well. He is off all support and getting better each day. He still has a few irritating things which are yet to clear up, and the ICU team wont let him out of their sight until these are sorted….ears, eyes etc but overall they are pretty happy with him. His voice is getting stronger. He is starting to run the place – every nurse and wardie totally engaged in his recovery. As only Matthew can, he is already inspecting his charts and knows his levels and where they need to be ….

He is spending more time outside and in his sofa chair in the ward and his food variety is increasing as his ability eat more than puree is improving. Of that he is very grateful, and shout out to Sally for her pulling of strings to help increase the variety. Thanks so much. He doesn’t understand the volume of food he has to eat, and his goal is to eat half the food on his plate …. as he says, he is physically half the size he was….with a smile.

His humour is intact. Had a few laughs with him and his humility, patience and sense of acceptance has me inspired every moment I spend with him. He has his sad days, but he is so focused on the silver linings, they don’t seem to last too long for now. Amazing. Matthew and Diane had a ‘date night’ on Friday night; a chance to spend some quiet time together at long last. The nurses helped out doing everything they could to make it special for them! [Kate’s note: Di dressed in a gorgeous little black dress and took in some battery-operated candles, while Eamon, one of our favourite nurses, raided the coronary care unit for a DVD player and television, so they could watch ‘The Girl with the Dragon Tattoo’].

All things going well, we are starting to see an end to the ICU visits – the plan is to move Matthew straight to rehab from ICU. A little unorthodox but Matthew case is a bit unusual. And then the journey commences for Matthew and the team in rehab to focus on independence and getting him moving. This could be within 10 days, we hope. A private room with a chance to engage with the family away from beeping machines, nurses looking on and constant interuptions. He is looking forward to it.

And that is when our work will start and we will commence contacting our small network in our emails to update with you with our strategies for renovatingmatthewames. This will involve fundraising and activities and will call upon you all to participate in some way. We have had many expressions of support and help, and we are developing a plan…..you will be the first to hear and work with us on this plan.

Take care and will send updates as we can.

Have a great week, Rachel.

And a little note from Kate:

I managed to see Matthew for the first time in 10 days on Saturday night, thanks to an overnight trip for work. It was so lovely to see him looking so much better. He had us laughing, and asked Dad and I to test his memory, because people kept asking him if it was OK, but no-one had actually asked him questions to see if it was. So we did. No surprise that he’s as sharp as the tack he has always been. He’s also feeling sorry for the ‘speechies’ who are doing a bit of trial and error with his food and trying to be accommodating to his tastes. Some things work (chocolate) and some things don’t (caramel), but he’s enjoying the process of trying. That he would feel sorry for anyone else is an indicator of how special he is. His current focus is on his speech and tongue, having achieved his first goals of breathing for himself so the tracheostomy could be removed, and being able to eat properly is the next big goal. Will keep you posted.