Still Waiting

Tilly excelled herself in swimming in the warm waters of Horton Lodge Community Special School. Tilly discarded all her buoyancy aids, tipped her head right back into the water, leaving her mouth and nose clear, and then swam three lengths. Tilly beamed, “Just me and my bikini!”

Tilly’s dazzling smile soon faded, however, as we broke the news that she needed to go and have blood tests in preparation for surgery the next day. The promise of a MacDonald’s Happy Meal went a little way to ease Tilly’s anxiety. Ellen, Tilly’s helper, came along too which was a great support for both of us.

However, on her journey to the dreaded Treatment Room, Tilly just ‘lost it’. Knowing how difficult it is to collect blood, complete and abject fear overtook her and Tilly let our blood-curdling, heart-rending cries. Needles terrify Tilly, and there seems to be no amount of consoling or rationalising that will calm her. It is an appalling experience for all concerned. A brave and experienced Doctor eventually succeeded in collecting the required samples. We were all nervous wrecks.

The other news was that there was some doubt about the availability of a bed in the Paediatric Intensive Care Unit so we would need to telephone before returning the next morning for surgery. They were waiting for a child to be well enough to be moved out of intensive care to the general ward. The writing was on the wall.

The morning’s news was still rather uncertain, but it was recommended that Tilly attend as the hospital were doing everything they could to accommodate her. Tilly was exhausted after her traumatic experience and late night, and the early morning journey in the dark was tense. Upon arrival we were warmly welcomed and then given the unwelcome news that the blood tests of the previous night had clotted and they needed to be repeated! All colour drained from Tilly’s face and I thought she was going to keel over. We were taken back to that dreaded Treatment Room with a wonderful nurse who somehow managed to calm Tilly a little, and even managed to collect some blood. Poor Tilly was almost convulsing with fear. A mother’s worst nightmare! A sense of helplessness prevails.

The rest of the day was spent waiting. We were treated to a visit from Tilly’s surgeon, Mr Ahmed, who always inspires great confidence in us. He reported that it would not be possible to proceed without the guarantee of a bed in Intensive Care for Tilly being available, and that everything possible was being done to achieve this for her. I signed the consent forms, ‘just in case’.

As the hours slipped by, so our hopes faded, and by two o’clock it was announced that surgery was officially postponed! Tilly wolfed down a picnic lunch provided by the ward and talked about all the things that she could do now that she was not having surgery, like Brownies, swimming, and the Treetops Santa on the Run event on Sunday. We both had that strange feeling of relief and disappointment, all at once, that you probably only get when a planned operation is cancelled.

As we drove home, Tilly said that she felt ‘Damn Flabbit!” (a Hannah Montana expression) that she’d had all those blood tests for nothing, but now she will not be afraid of a measly little swine flu jab – that would now feel like a doddle! “It’s an ill wind,…” my Mother always says, and she’s right.

We got home, unpacked and rang around everyone re-instating the things that we’d cancelled. Everyone who’d been holding their breath for us now let out cries of frustration for us. All agreed, however, that it just couldn’t be helped.

We trundled off to Brownies and to Tilly’s amusement the activity involved needlework! Brown Owl had carefully prepared Tilly’s activity so that she could sew her own Christmas stocking independently, and she did! It is now filled with chocolates and Nana will be delighted with it as it is all Tilly’s own work. Brown Owl is brilliant!

That night Tilly prayed for everyone in the hospital, especially for the family whose child was too poorly to be moved out of Intensive Care to make room for her. They too are still waiting.