It’s a bloody good question. We don’t really know.

Woody has always been prone to croup – we think he’s had it about 16 times now but we’ve genuinely lost count. It’s a horrible thing – almost always happens at night and we’re woken by a horrible barking cough and Woody being distressed and unable to breathe properly.

As he’s got bigger, croup has tended to get more and more severe. This time, however, the usual steroids and nebuliser weren’t doing their job and he ended up in Intensive Care (ICU). Stewart was with him while I stayed at home with Robin.

He ended up needing to be intubated and put on a ventilator because his airway was at risk, and when you are ventilated, you need sedation. So when I saw him the next morning, he had a tube taped to his face, was covered in lines and wires and was knocked out on sedation and paralysis drugs. A huge step from a mere croup episode.

They found that he had parainfluenza and that’s what caused the croup. It also meant he had a lot of gunk on his chest and while he was sedated, some very strong physiotherapists had to come to pummel his chest to free the secretions and suction them out.

When the doctors thought that the croup had eased and Woody’s airway had relaxed enough, they extubated him and slowly weaned the drugs. It seemed to take him forever to come round. I was desperate to see him awake but when he finally was, he was distraught. He couldn’t open his eyes but was flailing around and very uncomfortable. It was horrible to see, but we learned that this can happen as part of the withdrawal from morphine.

Woody was deemed well enough to be moved down to a ward. I went with him and got him settled into his new room. It felt weird not to have a dedicated nurse by his side like in ICU but I was comforted that they obviously thought he was doing well. Woody remained agitated and in a very sleepy state. As time went on, he got more and more sweaty and he started to look very pale and unwell. Occasionally, his heart rate would spike and then drop back to normal. I had no idea what was going on and tried to get a nurse or doctor to take a look at him.

Eventually, a doctor came to see him, just as Stewart and I swapped over and I went home to look after Robin. Before too long, Stewart let me know that he was back in ICU. They weren’t sure what happened but agreed he wasn’t well nor ready for a ward. They suspected he had been having seizures and continued to have these once he was back in ICU.

Yet again, he needed to be intubated and put on a ventilator, to help him stabilise. This meant more sedation and it felt like we were starting all over again. It was crushing.

He had already undergone a very thorough MRI scan and this brought back two quite shocking results.

1. Alongside his congenital heart defect (Tetralogy of Fallot), Woody also has another congenital abnormality called a portosystemic shunt. About 1 in 30,000 people have this defect. Essentially, there is a join between the blood vessel taking blood from the gut to the liver and the blood vessel taking blood to go back around the body.
   This join shouldn’t be there and means that some toxins that should be broken down by the liver end up back in Woody’s circulation. Amongst these toxins is ammonia which can be harmful to the brain.
2. Woody’s brain has had a pretty serious and acute insult. Exactly when it happened, they don’t know. Exactly why it happened, they don’t know. They don’t think it’s simply due to the ammonia levels, but they honestly don’t know. It’s called encephalopathy but that’s a very broad term.

As ever, Woody has left consultants from various specialisms scratching their heads.

The liver issue may be reparable with surgery in Birmingham where they have a specialist team.

The brain issue – we simply don’t know. Woody is now awake and able to move and protest and cry. We know he can hear. We don’t think he can see properly at the moment. To be honest, we don’t know what he’s experiencing and it’s heart-breaking to watch. We’re desperate to get our little boy back but at the moment, we don’t know if that will happen and if it does, when that will be.

We have spent the last two weeks watching and waiting. And it is agonising. I have felt utter despair, sadness, determination, anger and resentment.

I cannot understand how this happened and why poor Woody is being put through this horrible experience after everything he has already gone through with heart surgery, croup and sepsis. It simply isn’t fair.

And it’s just exhausting to juggle looking after a 10 month old while being there for your child in ICU. Our friends and families are amazing and working hard every single day so we can battle on and keep our heads above water. I don’t know what would become of us otherwise.

But we just want our little boy back home. Running around, playing with his toys, getting annoyed because I put the wrong programme on Youtube. The uncertainty of all this makes it impossible to remain upbeat all the time. We’re just surviving day to day.