9th June
1.30am I rang PICU to check Freddie was okay. They said he was fine. I rang again at 7.30am again he is fine. Settled. Not sure what I'm expecting them to say? That he has moved. Sat up. Its a horrific nightmare?
They decided to keep Freddie sedated and ventilated for the weekend. His mouth is too swollen from all the blisters to be able to breathe on his own. They plan to keep him settled over the weekend and hope to have his oxygen off by Monday.
They checked his lungs today with a camera ad they were worried there may have been blisters there. There wasn't. Thank the lord. But will check again Monday.
We were given a room at Crawford house. Which is ran by a charity called the Sick Children's Trust. This meant we could stay on the hospital grounds and be at his bedside in minutes. It also meant that Joshua and Alfie could stay with us.
When we were shown round Crawford house it was like an outer body experience. This is real. It is like I was living a TV show scene. Things like this don't happen in real life. Right? Wrong.
Nothing can prepare you for seeing your child ventilated, being kept alive by machines.
His body being pumped with maximum paralysis drugs and maximum pain relief drugs.
But after an hour or so of sitting. Holding his hand. It was comforting seeing he was no longer in pain. The pain. The screams of the days before were no more. He was peaceful. He was resting.
10th June
Today was a weird one. My family came into Newcastle with a picnic. We went and sat with Freddie for a bit then we went over to Leazes Park. The sun was shining, people were laughing but there was am empty void. A huge big lurking sadness.
Freddie was started on steroids to help down his reaction. They had now confirmed it was Steven Johnsons, but they were still waiting for clarity of what had caused it.
I thought Freddie's skin looked better than the day before. Less blistered.
They started him on 10ml of food through his NG tube every hour as he had started absorbing it whereas he was previously.
They also upped his eye care to try and speed up the healing process.
I went back over at about 9pm to see Freddie again. To talk to him. Stroke his head and hold his hand.
I could hear Sam Fender playing as I was walking back over the Crawford House.
Sunday 11th June
I went and sat with Freddie for about 3 hours while Dean took Joshua to football.
I personally don't think he will be off oxygen tomorrow.
This lovely Dr Christo said this:
They are being led by a few factors:
- his eyes - they need cleaned properly and couldn't do it if he was awake.
- his skin - how sore it is likely to be and they don't want him to scratch and pull things out.
- whether he needs oxygen. He could have a mask but given the state of his skin it would likely burn it if he needed oxygen.
They said they were going to be led by his eyes when deciding when to take him off oxygen and ventilation.
He is now up to 100% food.
They have confirmed that it was indeed a chest infection that he reacted too 😞. The chest infection was mycoplasma pneumonia. The bacteria got into his bloodstream and his immune system went in overdrive trying to fix the problem.
I was told SJS is very rare only 1 in a million get it. Which was reflected in the staff at the RVI most nurses had never heard of it. Doctors had but only at med school. We only came across 1 surgeon that had seen it before and he was into his 40 year career.
I went back over to see Freddie at about 9pm to give him a good night kiss. There were lots of people around him. Looking a little flustered.
I was approached by a woman. She said that Freddie's tube had come out slightly and they needed to check the position of it. They were waiting for X-Ray to check it.
They said I should leave and they would ring with an update.
10.30pm they rang to say the tube was a little short and they were waiting on a consultant to make a plan. Dean had already gone across to sit and wait.
11.55pm Dean rang and said they were keeping him how he was for the night. He was due into theatre tomorrow anyway. Ideally to remove his breathing tube and put on a nasal one so they could clean his mouth.
I didn't sleep much. Worrying about him.
Monday 12th June
Today Freddie is meant to be going into theatre again. To hopefully take breathing tube out and most likely put a nasal one in.
They didn't end up taking him to theatre. They decided to keep the same tube in and just reposition it. Slightly annoyed as it was done at his bedside and the plan that had been discussed several times didn't happen.
His skin is looking very red but they did give him a good clean.
Tuesday 13th June
Today as far as I am aware was to keep him settled and calm. We had been told we were being led by his eyes and things are going to take time.
Though by 8pm they had started reducing his paralysis and he had started moving, more than they wanted. So they upped it again.
They examined his eyes and said his eyes were much improved. His right one was completely healed and his left much better though still scratched. But much better.
They are now hopeful the tube will be out tomorrow. I'm not overly sure he is ready.
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