Part 1. Part 2.

Eternity ended.

A nurse told us that Jenny had got through the operation. That was huge. At that point, further details would have been lost on me. She was alive. We filled up with joy and tears and love. She hadn’t died. Our worst, unspoken fear left. We could breathe. So, now what? Gather strength, plough on.

Soon, we were allowed to go through to see her. In bed, unconscious, she looked broken. She had <deep breath> a cannula in her hand and another in her foot. She had a huge, junction type cannula in the vein in her neck. She had a drainage tube sticking out of her chest, breathing tube in her mouth and another tube in her nose. She was covered in monitor stickers and also had two wires, attached directly to her heart, which came out of the side of her belly. She had dressing covering the wound, which had a slight blood stain on it. The dressing was surprisingly small.

Jenny was on heavy dose painkillers, diuretics, fluids. She had banks of monitors on either side of her, measuring everything imaginable. The ward was full of beeps.

jenny301Emma and I kept squeezing hands. Happy, anxious, helpless. When Jenny stirred, she was thirsty. Understandably grumpy, uncomfortable and tired too. She looked simultaneously awful but wonderful too because she was alive.

The very first time she slept, we noticed she wasn’t sweating. The change had been immediately noticeable.

She was in a specialist cardiac intensive care unit (ICU). This meant that a nurse was allocated just to her, 24/7. The ventilation tube had been removed from her mouth but everything else remained. The large cannula in her neck with the thick tubes looked uncomfortable but she didn’t complain. Not once.

Within 24 hours, Jenny was sitting up. Shortly afterward, she was feeding herself. You hear about kids bouncing back, but this blew me away. I would have been incapacitated & feeling sorry for myself for a month. Jenny just got on with it. A nurse told me this is why children make the best patients. It’s soul-destroying when something goes wrong, but they don’t seek sympathy as much as adults.

Jenny got her present from the Zak Scott Braveheart Foundation, a talking Minnie Mouse. The knowledge that the gift came from people who cared about children like Jenny was a great support. I hope they have some idea of how touching this gift was. Every time I talk about the Foundation and their work, my eyes well up. Every time.

The ECG reveals that the heartbeat is made up of five distinct parts, referred to as PQRST. They all have distinct waves within the heartbeat shape, and each mean a different thing. Ideally, an electrical impulse goes across the heart, triggering the upper and lower chambers (artia and ventricles) to work in sync. When synchronised, this action creates one PQRST wave, efficiently pumping blood around the body.

jenny302After a couple of days, and while still on an external pacemaker, it became clear that Jenny’s heart wasn’t carrying this out properly. The electrical current wasn’t following the correct pathway. When the pacemaker was removed, her heartbeat became fast and erratic. Aside from this flutter, everything else was going perfectly, and she had been removed to the High Dependency Unit. Most of her tubes and wires were gone.

Nurses who cleaned her wound commented that it was clearly Chuck’s work. Low down, small and neat. Legend.

After a week, she was sitting up, playing, watching videos and still not complaining. She was even allowed visitors. We were there from early morning until night time, sleeping in the Ronald McDonald house. We must have watched Tangled a hundred times (at Jenny’s request). Jenny developed a love for magazines with stickers in them. She lived off yoghurts and we lived off the tasteless hospital food. She won over the hearts of everyone that met her.

As much as she was improving, she was again stuck inside a cage-bed. It hurt to see her stuck inside with the sides up. The doctors needed it though. She still had wires protruding from her belly for the pace-maker. Her heart still was refusing to beat in sync. It was so frustrating to hear every evening and morning at the doctor’s rounds that it just hadn’t recovered like it was meant to.

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And then it did. Simple as that. They tested her heart and were happy with the results. She was allowed to go to the normal children’s ward. Once there, she settled in, then was told that she was allowed to go to the play room & play with the toys. Joy!

Her room was hot. We were desperate to get home. Nurses made half-promise observations that they were sure it wouldn’t be much longer. It was day ten or 11 and we were exhausted & running on empty. Then a doctor just casually said that once the pacemaker leads were removed, she could go home. Home! Back to the family, meals, normality. Life.

We were given leaflets, told about warning signs and educated on the ongoing prescriptions that were needs, particularly related to diuretics and fluids. After a seemingly eternal wait, we were given the green light to go. We went. We collected Rachel, Eve and all went home.

These photos are from the meal that we had that night. The best family meal that we have ever had.

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Jenny is now 4 and a half. She is still well below the normal height for her age, but that’s the only outward sign of what she went through. She goes to nursery and is a smart, active, normal child. She has an annual check-up at Yorkhill and is doing fantastically. She’s also still laughing.

If Jenny’s story has touched you at all, I’d ask that you consider a donation, however small, to the wonderful Zak Scott Braveheart Foundation.