Friday, 28 January 2011

Bit of a blur - Day Seven - Friday 28th

The last 24 hours have been a bit of a blur. Evan has been sedated for most of it but from time to time he has had to be rolled over or moved for various reasons and that has caused him a bit of distress. However, he has remained his usual self throughout. He said to one of the nurses; "Excuse me. Excuse me. I'd like to get out of here" and then "I command to go home". They all think "he is just darling...".

We were lucky in that we had somewhere we could sleep in the same room but it was very difficult as every beep on the monitors (for breathing, blood pressure, oxygen and medication levels) screamed for our attention - even though we couldnt do anything. As with 6 years go we quickly learned what was what and which to try and ignore. 

When he was upset, we tried to calm him down but it was difficult to get a decent way of hugging him, in amongst the wires and without hurting his back. Also, he found it difficult to understand that he could "just go" (to the toilet) and didnt have to be taken to the bathroom. Thankfully, he was able to sleep for most of the time. We took hourly slots to try and sleep so we managed a couple of hours each.

Morning arrived and we were told that he would move to Floor 12. Which is the regular ward - a great sign that they think he is progressing well, although the plan is still to keep him sedated for the next day or so. I popped back to the hotel to pick up a couple of things and then, shortly after I got back, he was moved to 12. It is a bit better in that we have a room to ourselves and we have some decent reclining chairs to try and sleep in. When he does wake he is a little "clingy" but he's doing ok. Tough times, as expected, but he's doing really well.

We also had chance to Skype Maya and Sam who are reunited after a few days apart and who are joining us tomorrow. Cant wait !!!


  1. I love the "I command to go home". I mean do they seriously not know that Ev is a local celebrity! Good on you Evan, remind them who's boss.

    Love to you all, safe flight to Maya & Sammy and Grandparents too x

  2. You can send a message or a gift via:
    The online system won't accept UK addresses or numbers so just put in the hospitals :
    One Children's Place
    St. Louis, MO 63110
    Phone 314-454-6000 (inc. the dashes)

  3. Chris Wordsworth28 January 2011 at 21:43

    Andy, sounds like he's being brave and doing well.

    I hope it continues, and Evan and the rest of you are all doing as good as can be expected.

    Take care