Wednesday, 30 September 2009

Trying Times

Tilly spent an anxious, but enjoyable day at school and did manage pretty much to push the thought of her pamidronate infusion to the back of her mind. We were greeted at Ward 112 like special friends and settled into a surreal 'calm before the storm' scenario with Tilly covered in cream to numb the pain of the needle entry whilst waiting for a very long hour for it to take effect. Tilly was amazing right up until the moment that the door closed on the Treatment Room and the two wonderful nurses tried to find a vein in which to insert the needle for the cannula. No matter how much preparation we'd done and big talks about 'rational fear', this was a little girl terrified of the incoming needle who worked herself up into a traumatic lather. It was absolutely unbearable for all concerned. I tried to get the balance between being a 'strong' mum, a 'loving' mum and a 'sensible' mum, when all I wanted to do was grab Tilly up in my arms and run away as fast as I could to make it all stop. However, after many attempts, the skill and dedication of the nurses prevailed and the cannula was in place. The relief on all sides was tangible. Incredibly, once out of the Treatment Room Tilly returned to her usual chirpy self and we spent the long evening playing games, reading and chatting. Rolf created the most delicious pasta for me to have for my meal which was heaven and Tilly also thoroughly enjoyed and has ordered for herself on another occasion! It was a very late night with us not getting Tilly home and into bed until after midnight. Tilly has her arm in a sling and now we've got to pray that the vein holds out for the next three days and she will not have to go through the 'needle bit' again.

Didn't see Candice at all this, relied upon the good will of a special friend to bring her back from rehearsals. Broke my heart at 0600 Tuesday morning when I'd failed to notice that she'd left her door ajar for me to pop in, say prayers and kiss her goodnight. I went in immediately, hugged her to me and prayed that Candice would forgive me. Candice is such an incredible little girl who never ceases to fill my heart with joy and love. Her road 'chez Tilly' is an interesting one. I am so pleased that Daddy is so dedicated to ensuring that she is able to shine and participate in all and every activity even when Mummy is away from the home with Tilly. I remember once, following a long hospital admission with Tilly, Rolf saying "It's my job - it's why I'm here". Again, we're so lucky as so many other couple are unable to stick together when there is a child with a disability. I can 't imagine managing without Rolf. I often think it is because we are older parents, and wonder if we'd have managed if we were ten year's younger? Who can say?

Tuesday morning's alarm was all too sudden, and signalled the start of another hectic whirl to get the girls and Tilly's Teaching Assistant to school on time. Tilly was tired but cheerful and very cautious to protect the cannula which made getting ready for school all the more challenging.

I needed also to be 'suited and booted', complete with laptop to attend a meeting as Secretary of Rudyard Sailability with the regional Manager of British Waterways - all extra pressure early in the morning! I travelled with Charlotte Atkins (MP) who is a long-standing active supporter of Rudyard Sailability and Trustee of the Charity and eventually (after really sluggish traffic) met up with Dennis Priebe, our Chair in the BW offices at Kidsgrove. There's nothing like getting lost on the way to an important meeting to really get the stress levels soaring! The meeting, however, was extremely positive and I did detect a small glimmer of hope that there may just be a way forward to calm the troubled waters at Rudyard Lake. It will take a lot of hard work and careful handling, but I feel quietly confident and just a little excited that now that British Waterways has offered to step in and broker negotiations we might just get the boat store of our dreams to support the work of Rudyard Sailability. Time will tell.

Scooped up a bubbly Tilly from school and made our way to Ward 112 at the North Staffs. Once again we were welcomed like special friends and we even bumped into Tilly's Respiratory Consultant for a catch up. Tilly so loves everyone at the hospital, I am sure they are like family to her - favourite Aunties and Uncles on her doorstep.

Great relief that the vein had held, despite a few worrying moments when one of Tilly's favourite nurses had to sort out a little clot and had trouble flushing the cannula to get started. Ellen arrived much to Tilly's great delight and was charged with the task of reading the book of the Hannah Montana Movie and I was dispatched to collect the Happy Meal from McDonalds. Rolf had created a fabulous lemon cous-cous with vegetarian falafals, Greek Salad and pita bread meal for me. It was so delicious and made me feel very loved.

We were then further treated to the unexpected arrival of the glorious Annabel, one of our most treasured friends who also happens to run "Racketys" a specialist clothing company for all those who live with disability. Annabel is a splash of colour and inspiration in the wardrobes of families like ours and she "Get's it!" - she has an insight into "our world" and understands that we want to look fab and not be horribly stressed trying to get dressed. Annabel actually revealed to my chagrin that there is a bigger market to dress dogs and teddy bears than people with disabilities! I'm right behind her and feel sure that Rackety's will start a clothing revolution!

Following a preview of Annabel's latest arrivals and great input from Ellen, Tilly and Annabel settled down to look at photographs on Tilly's laptop from last year's Pride of Britain and amazing Destination Dreams to Florida. Time flew by with such lovely company and we found ourselves on our way home and into bed by 1000. I did make sure that I went in to Candice who once again had been brought home from Cross Country with another special friend. Rolf told me that they'd had a great evening with a pasta and a viewing of The Time Machine.

I felt a little uneasy about Tilly overnight as she didn't just sound settled. At 0600 this morning I noticed that her heart rate was up cruising at around 130 instead of a steady 90ish. Tilly looked really tired and felt rather warm so when I roused her I wasn't surprised to learn that she felt a bit rough and even shed a few tears at the thought of 'getting going'. I suctioned a bit of 'rubbish' off her chest and fear that there may be 'something' brewing. Tilly was happy with the suggestion of going back to sleep and seeing how she felt later on. It could go either way at this stage - her oxygen saturations are still very good. Rolf has also informed me that the side-effects of pamidronate include raised heart rate and fever, so we live in hope and will see how she is later. I telephoned Channel 5 News who are due to come and film Tilly today to warn them that she may not be equal to any of the planned activities such as sailing, and warned Dennis at Rudyard Sailability that we may need to postpone the planned activity. Channel 5 have decided to come along anyway, and Dennis is standing by. We will be at the hospital later in any event so Tilly can be checked over by the doctors. I pray she will wake up her sparkling little self, but I am worried.

Candice was a delight this morning - all excited for her workshop at The Victoria Hall. I am thrilled that she is involved in the Shakespearean Festival and she is loving it. We are a bit stuck for a lift home for her after netball but we have been offered help to get Candice to and from Guides later on. Rolf says that if folk had come to stay at the B&B over the summer we may now have a runabout car to manage such situations. Fortunately, this month has really picked up and we've had a little flurry of arrivals - perhaps we'll have a jalopy before too long to solve this tricky situation?

Whilst writing I am listening to every breath that Tilly makes on the monitor and is sounds quite steady, with the ventilator giving her the support she needs. I'm praying for a yet another little miracle. Trying times.

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