Wednesday, 7 October 2009

The Chequered Flag?

When Tilly's Support Worker, Ellen, arrived at 4pm yesterday afternoon Tilly was not looking good. The vertigo was still whirling and the chest infection had begun to take hold. Tilly's oxygen levels were starting to drop and we needed to get going on a full range of intensive 'secretion management'. We worked through the nebuliser, 'shaker-maker' (chest physio-machine), cough assist and suction unit. Tilly is quite brilliant to cooperate with these procedures, especially when feeling so vile, as she has to insert a tube into the back of her throat and literally hoover out the secretions that would have settled on her chest. There are many adults who could not contemplate this action, let along a young child, but it really has been the key to the successful outcome of so many serious infections in the past. We settled Tilly into bed early, where to our enormous relief, her oxygen readings had improved.

In the meantime, Candice had been picked up by Daddy from a Cross Country Meeting and was soaked to the skin, but wreathed in smiles. Candice hadn't won, but hadn't lost, but had loved being part of the muddy experience. Ellen sat with Tilly whilst we had 'tea for three'. Candice tried to explain "A Midsummer Night's Dream" to us whilst we enjoyed Daddy's pasta. During our flying days, Rolf once snoozed through an entire performance of this play in the Botanical Gardens, Sydney, whilst the possums ate the picnic he had lovingly prepared for us! He confessed that Shakespeare isn't really his thing, but he couldn't wait to see his beautiful daughter on stage. I just prayed that I would be able to too!

As part of Channel 5 News' "Britain's Kindest Kid", Tilly and I were supposed to be off to No. 10 Downing Street to meet the Prime Minister on Wednesday morning - leaving in a car at 0600, and returning to The Victoria Hall in time for Candice's performance. The trip to Downing Street had been cancelled due to Tilly's ill health, and now I was afraid that I would miss Candice's big moment. We'd left a message with the Children's Airways Support Team with a cry for help and Vicky was going to get back to us.

At 9pm Tilly looped the last loop on her vertigo roller-coaster and began to engage in conversation. She asked if her bed had some wood on it, and when I said yes, she replied, "Touch it then, because I'm going to say I think I feel better!"

At midnight we repeated the same respiratory routine as earlier with Tilly expertly shifting a lot of 'rubbish' off her chest that would certainly have given great problems if they'd been left to pool overnight.

It was great to get through another night shift without a crisis. Candice was on sparkling form this morning, all excited about her production. I just wished I could have reminded her to take the beautifully packed PE Kit that was perfectly parked by the front door! Candice is still young and still needs her own support to manage her busy life.

At 8 am Tilly goes through all her respiratory routine and even manages to eat a little of the old favourite 'dippy-egg'. Treetops Tracy rang and was thrilled to hear that Tilly was showing signs of progress. Tracy is hoping to see Tilly next when she is really up to playing, and reassured me that I need only ring if I felt we needed another visit sooner. They are amazing and so very encouraging.

Tilly was wondering if she would have any visitors today, so I scooped up Vienna, one of our two wildish pussies that live outside, and smuggled her in for a quick visit! I don't know who was more surprised Tilly or Vienna - but it was lovely to see Tilly smile.

Tilly spent most the day awake, the first time since last Wednesday, chatting and planning all that she will do when she is really better. Tilly and Daddy spent a couple of hours watching TV together in the afternoon. This was lovely for them, but I could also catch up on myself. Rolf and I both working at home with the B&B does certainly have advantages when dealing with our situation. I can't imagine for one minute how we'd cope if one of us worked nine to five, but there are so many other families that have to, and manage it brilliantly.

Later, when Rolf had popped out and things were about to go pear-shaped with Tilly needing help, the phone ringing and guests arriving - a wonderful lady from the Children's Palliative Care Team arrived, just like Mary Poppins, out of the blue. Naturally, it had all been arranged, but once again, within the hectic whirl, I had forgotten to remember (just like Candice' PE Kit)! Julie was great, and will now be visiting Tilly every other Wednesday for two hours after school which will be brilliant for getting ready for Brownies.

Wonderful news from the CAST Team - Sue has been able to rearrange her hours so that Rolf and I can both go and see Candice on stage. Fantastic! We left Tilly in Sue's expert care and then drove off in to the most beautiful sunset (literally) on our way to Hanley. It was breath-taking and equal to many an African sunset I'm sure, and certainly set us up for a fabulous evening.

The Shakespearean Festival was a success. An inspiring project to get young people gripped by Shakespeare's plays, and even relate them to their own lives. A terrific experience for all involved, and such a privilege to perform on a 'real' stage. Everyone excelled and, of course, Candice was our shining star! I am so glad that I was there to see her sparkle!

Tilly and Sue had spent a calm and relaxing evening together with lots of secretion management required. There are so few people that can look after Tilly in this way - we are so very lucky to have such fantastic people who can really improve the lives of all our family.

Tilly remarked that she thought she could see the "chequered flag to Well-Town". Well I consider that to be a fair swap for Downing Street! And I'm sure Mr Brown would agree.

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