Mae’s first day

29th January 2014

After a long day yesterday, Mae woke at 5am (11am GMT) in a panic, wanting to know where her wheelchair was and why she had to have a drip in her arm. Understandably these are hard questions for her family to explain the answers to, and it has been difficult to hear that Mae has been unsettled. Mum says: ‘All of the answers are days away and so it seems quite hard to find the right thing to say. I’ve been trying to reassure Mae that it shouldn’t be too long as I don’t want to cause her any further upset. The more upset she gets, she cries and then says “Mum, my back hurts” For a split second I wished I could give her the world back that she feels comforted in and is so used to….’

After a few more hours sleep (10:45 St Louis, 16:45 GMT) Mum updates us: ‘Mae had a catheter leak and so we have had a few more tears with a bed sheet change and rolling her. Mae asked for some Weetabix, which is great progress, and the first thing she has eaten since her pre op fasting. Good job we bought some with us as they don’t have it here in the US. The nurses have been fascinated by it. Mae managed two Weetabix which I am really happy about. Last night there were concerns about Mae’s fluid levels. In recovery she had a drip and then she was having small sips of apple juice. Through the night her catheter levels were low. Thankfully they are now on the up. Mae is now sleeping peacefully and the nurses are happy with her progress!’

When Mae wakes she will be greeted with this huge bunch of balloons for her bravery, sent by her Auntie and Uncle!

Balloons for brave Mae

Balloons for brave Mae

Post-op update, day 1

Good morning everyone! As we start our day in the UK, Mae is enjoying her first night of sleep post-op in St Louis. So far she spoke to Mum at midnight (GMT) and asked when she could get in her wheelchair! Then Mum met the ‘touch-dog’, Pepper at 2am (GMT), whilst Mae was sleeping, before everyone retired at 7am (GMT). Here’s a message from Mum at 7am (1am in St Louis):

‘Feeling tired. Today has been an 18 hr day. Time to get some sleep before the doctors do their rounds at 6am. Mae has been sleeping for the last few hours. She has been turned and seems to be coping well.’

So, we’ll know more at about 12 noon GMT, when the Drs do their rounds. Well done Mae and we’ll keep you posted here and on the Hope4mae page. Thanks xx

Mae, sleeping peacefully following her SDR surgery

Mae, sleeping peacefully following her SDR surgery

Mae is in safe hands :-)

Mae is now in surgery with Dr TS Park for the operation that will change her life.
Please keep her in your thoughts and prayers xx

Mae pre-op

12:21pm St Louis (18:21 GMT) From Mae’s Mum: ‘Just got our first call from Angie in theatre to inform that Mae is doing just great. Dr Park is almost ready to make the incision. Feeling really positive. Hopefully we will have another update in around an hr.
Thank you so much for all of these supportive messages. Feeling very loved xxxx’

13:40 St Louis (19:40 GMT) From Mae’s Mum: ‘We’ve just had our second call to say that Mae is tolerating everything and doing great. Dr Park will have finished the procedure in around an hour.’

14:30 St Louis (20:30 GMT) From Mae’s Mum: ‘Our third call: Mae is stable and Dr Park is working on closing her incision.’

14:55 St Louis (20:55 GMT) From Mae’s Mum: ‘Mae’s surgery is now complete and she will soon be in recovery x’

16:50 St Louis (22:50 GMT) From Mae’s Mum: ‘Mae is doing great. We’ve just had a transfer from recovery to Mae’s new room for the next few days’

We’ll update you on news in the morning, UK side. In the meantime we can all go to bed knowing Mae’s doing well! Thanks to everyone who has follwed Mae’s progress through the day. We were overwhelmed to reach over 2000 people at our height of activity on facebook today. Thanks for the support xx