There are many things about Tilly that really blow me away, but she has completely excelled herself this time.
At 0900 on Thursday morning Tilly arrived at hospital and had her hair beautifully braided by the Play Specialist in preparation for her operation whilst the sedative medication took effect. Daddie then read her the Psychologist's Hot Air Balloon story to relax her whilst Andrea and I got Tilly into her gown and put her into bed. Everything was very calm until the curtains opened and the porter arrived to take Tilly to theatre. Tilly immediately 'lost it' so we began one of the Psychologist's recommendations of telling a story between ourselves using three words at a time. Amazingly it seemed to help and Tilly and I began an adventure to Hollywood to meet Hannah Montana, who'd thrown a party with Robbie Williams there to greet Tilly, etc, etc. The Play Nurse who accompanied us also insisted that Daddie came too, and there began Rolf's first ever 'longest walk' in abject agony, helpless to stop his little girl being wheeled into 'who knows where'. It really was an excruciating journey for all of us, but Tilly managed the best that she ever has and arrived in a reasonable and understandable emotional state (which is more than could be said for Daddie).
I accompanied Tilly into the Anesthetist's ante-chamber where Tilly was spiralling away into further distress, so we started on another story of an actual visit to Los Angeles that we plan to make one day. Charlotte, the amazing Anaesthetist, arrived and filled the room with mirth, confidence and optimism - an absolute Star! She used a beautiful fluffy horse to gently waft Tilly off to sleep which worked a treat. As Tilly was floating away and I was telling her about what we'd do on in Beverley Hills she said, "I'm not here any more, Mummy" and drifted off. It is very difficult to describe how it feels to kiss your little girl goodbye whilst she has already 'gone' and then to leave her in the hands of the surgical team. My blood is instantly chilled and I am gripped by a tension that invades every pore, tightens every nerve and suspends every response.
With Andrea's help Rolf had recovered himself enough to be able to immerse himself in the day to day running of the day whilst Andrea and I disappeared into a parents' room to busy oursleves in the 'blinging' of Tilly's powerchair. I don't know how I would have got through the day without my special friend's loving support. We worked away the hours, getting little updates every now and then, until at last, after seven hours in surgery,we heard that Tilly was on her way back to the ward. We galloped up to the theatre and met Tilly, still intubated, being wheeled along with Charlotte and two other nurses. Tilly looked beautiful. All the tension left my body and positive emotion and energy charged through my veins as my 'coping Mummy mode' returned.
The slick operation in the Paediatric Intensive Care Unit was impressive as the team all worked with the speed of pit-stop technicians to 'extubate' Tilly and see if she could manage to breathe without her ventilator,and manage the pain. Within a few minutes of breathing for herself, Tilly was asking questions; ascertaining her situation and managing her own needs as she battled her way back to consciousness. It was incredible. Tilly's big emerald eyes would occasionally open and she would ask for Daddie who was on his way. As Andrea was leaving, Tilly turned through all the tubes and hoses and gave her a huge smile, a small thank you for all that she had done. It was now Andrea's turn to dissolve after being so strong for us all day.
Daddie and Candice arrived and found Tilly amazingly conversational and insistent that Candice stay with her rather than pop out with me for a bite to eat! It was quite surreal and so encouraging.
All night long I sat with Tilly as the PICU nurse monitored and observed and administered pain relief. I was in absolute awe at the strength and resilence of this little soul, and charmed by her witty and intelligent chats in the wee hours that really kept me going.
The next day was spent reducing pain relief medication, disconnecting lines and getting Tilly eating and drinking again. The first visitor was Ruth, Tilly's Psychologist, whose sparkling smile lit the room. Ruth was thrilled to hear how much her therapies had helped Tilly on her way to theatre, and even more delighted to hear that Tilly had requested some clinical photographs to be taken of her 'on the table' to help her with forthcoming procedures. I'm not sure that I'll be able to look at them, but both Tilly, Ruth and the Surgeon thought that they would help.
Andrea arrived next with Les, a MacDonalds Happy Meal and a pedicure; Daddie then arrived with news that an assistance doggie might be 'on the way'; Lucy, from the Children's Community Team, arrived with a chocolate cup cake and manicure set and Annie, a devoted family friend, arrived and gave Tilly a manicure. The day passed quickly with the added bonus that Tilly loves all the Nurses and her special friend from swimming on a Tuesday night was in the bed next to her!
The next day was called 'Operation Tilly' as it was planned to release Tilly from all hospital dependant needs. We managed to get Tilly into her powerchair and then Daddie and I took her up for the required X-rays. Once these were checked and considered to be OK, we found ourselves packing up and heading for home after just two nights in hospital. Even the Consultant on duty marvelled at Tilly's resilience, and like me, he said he'd still be under the covers after such a procedure.
Hard to describe the joy of arriving home with this special little girl, tinged, if I'm honest, with a little intrepidation of wondering if we'd done the right thing, and perhaps had rushed Tilly out too soon? However, after a beautiful calm night's sleep Tilly awoke feeling better than ever and looking forward to seeing Candice who'd been away on a Camping week-end with the Guides.
Candice arrived home tired, damp and thoroughly exhilerated with her camping escapades. The girls exchanged stories whilst I unpacked Candice's gear and Rolf prepared our evening meal. "Tea like a proper family for once" with both our little girls home and safe, has never tasted so good.