Riding the Rollercoaster...

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Yesterday was another difficult day. We had had a fabulous night. Heidi had slept well and had only needed paracetemol once in the night to curb her temperature. When they took her temperature 7 hours later, it was 37. I felt a flood of relief.  She was bright and chirpy and chatty and the rash had all but disappeared. We were on the home straight.

And then yesterday afternoon happened. Slowly I watched those red blotches reappear on her knees and elbows and her little face heating up. She burnt to touch. Her temperature was back up to 39.4, after some ibuprofen and a couple of hours, it had crept even higher.

I felt a wave of disappointment. I had felt such hope. She cried herself to sleep in my arms in the end… the contented and cheery nature of the morning long forgotten. When I felt her little head relax on my shoulder and laid her down I left the room and let the tears flow as I watched her through the window.

“Are you OK?” one of the nurses asked.

How do you answer that question? I lied. I answered in the truly British form “I’m fine” I couldn’t do anything else without turning into a blubbery mess.

In the afternoon Ava arrived, and for an all too short hour, I allowed myself the luxury of getting sucked into child play – the happy little squeals of a little girl delighted by the offerings of a children’s ward playroom. We drew, we made cups of tea and cooked potatoes (?!) in the kitchen and explored the delights of the sensory room. I miss her.

By the evening, Heidi seemed more herself again… I even nearly got her first giggle (but not quite) and she smiled and chattered with her ragdoll. She has fed well. That is a good sign.

The doctors are still uncertain as to what our little lady is fighting, and so it’s difficult for them to prescribe the right stuff. David has been a rock - driving backwards and forwards to hospital with everything we need, caring for Ava and just being the emotionally strong one, while trying to carry on with work as normal. My Mum, as always, has been irreplaceable. Ava is able to carry on in her own merry little world because David and my Mum give her that stability. I am so grateful to God for both of them.

The antibiotics do not seem to be working; the blood samples and 101 other samples they have taken are “not growing anything” which all points to a very nasty virus. They can’t do anything for viruses. We just have to wait it out and let Heidi’s little body rage the battle while we do everything we can to monitor her and give her respite when we can.

I have been utterly overwhelmed by the level of support we have felt through this – thank you SO much to every single one of you. I know I haven’t personally replied to everyone’s texts, Facebook messages, tweets, comments and emails, but we are so grateful to God for every single prayer, well wish, offer of help, visit and thoughtful gesture. We feel truly upheld by you all, and that is such a comfort.

I will keep you posted. Pray for good news today.

Cx