Remembering Lyla

Our SWAN uk group lost one of its own last night. 

Beautiful Lyla grew angel wings. My thoughts and prayers are with her loving family. 

Its something no family should ever have to go through. 

Death, loss, bereavement, however you want to describe it, it's always there, lurking at the back of the mind of any parent of an undiagnosed child, or any child with complex needs or severe illness. You get by in life, in the day to day pointless, trivial BS,  hoping it won't happen, or that it won't happen anytime soon. Sadly it sometimes will. 

Fly high Lyla

Day case natie

In the run up to today's hospital stay I have been an anxious mess. Camomile tea on tap and rescue remedy at the ready, not to mention the EFT tapping. It's terrifying to have a child with breathing problems and neurological issues have a GA. Then there's the worry of what the results of the MRI and skin biopsy might show. There's a damn good reason why we had a break from testing. The state of limbo while you await results being a huge part of it. But new symptoms meant that a better picture of nate's brain and another look at his chromosomes was necessary. 

However , I was stunned by the improvement in nate's breathing. 

We went into hospital for an MRI and skin biopsy with a GA, and subsequent PICU and then ward stay. Nate usually needs airway help and ventilation on his bipap machine. He usually takes about 6 hrs to wake up and then needs oxygen. 

What actually happened was that we went to recovery and found a partially awake natie on only oxygen :) We went back to the surgical ward and nate's oxygen requirement reduced quickly. He was alert and happy. Total contrast to previous GAs. 

Even more amazing was that we got to go home! We were a day case! Unheard of in the world of natie capers.

Huge change in my boy. 

So now we wait for the MRI results- will it show a cause for the gelastic and probable dacrystic seizures? Is there a hypothalamic hamartoma nestled in there? Will the skin biopsy provide genetic results for a mosaic syndrome? 

So now it's a waiting game 

Laugh cry or sleep

Christmas is complicated. 

Nate is difficult to buy for and can't do usual 3 year old things like ripping open presents and gorging himself on food and chocolate. 

Noise and chaos, although not upsetting to Nate, make him jerky and laughy ( and not in a good way). 

If anyone wanted a cuddle and could manage to lift him, chances are they would get bitten while he was in sensory overload. 

Shops are busy. People are stressed and even more inconsiderant. 

We had nights and nights of endless screaming and eventually gave in on New Year's Day and took Nate to hospital. They couldn't explain it and asked me to keep a diary to plot this screaming cycle deciding it may be either screaming seizures or some sort of seizure activity upsetting him. Thea is well used to being at hospital with Nate and came prepared. 

So the happiest parts of this holiday have been spent just being together. Snuggles in bed and lazy days. The holidays ended with a family trip to a relaxed panto performance of Cinderella watched from a box. Though that experience was more for us than for Nate. 

Back to normal now. Tests, appointments and meetings. But hopefully some good things too. Happy new year.