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13. Thank you

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 Though our journey is far from over. We still have a long way to go and we are unsure what the future will hold in terms of long term effects, we are grateful and thankful to so many people. My Mam, Susan and Dad, Jeff you both brought me up to be strong and my goodness I needed strength. You taught me to have a sense of humor and i definitely cracked some jokes throughout, not all appropriate but all lightened the mood. Thank you for looking after Joshua and making sure he still had a "normal" life  he loved his holiday at your house.  Thank you for being there when I needed you the most. I am proud to be your daughter. My sister, Katherine. Well I am not even sure where to start? You saw alot. You saw more than most. You stayed stayed me and Freddie when you didn't need to and you saved him and me more than you will ever know.  I hope some of the horror will be distant memories soon and they don't give you nightmares and sleepless nights. He is home now and he is ...
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11. Ward 11

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  Sunday 18th June We arrived at Ward 11 at about 6.30pm. Ward 11 is a burns ward. The lead sister was lovely. Very friendly. That night Freddie didn't really sleep. The nurse was in and out all night giving him his medication. Doing his obs. Checking his oxygen levels.  He was shattered. He needed rest.    Monday 19th June Freddie was shattered. He only managed a 40 minute nap today. Again with everyone coming in and seeing him. The door was forever opening and shutting.  He is starting to try food and drink - though his mouth is still sore, but he is trying. Progress.  Freddie is really sad and emotional. He wants to go home. He cries for Dad if he leaves. He cries for me if I leave. He said he just wants all his family here.  He looks at me with sadness in his eyes. I think his eyes look haunted. Can he remember the trauma he has been through? Is he looking at me knowing I was there with him. Holding him while they put needles in him? Can he remembe...
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12. Home time

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 Thursday 22nd June 2pm we were discharged from hospital. Follow up appointments been sent out in the post.  We went over to Crawford house to pack the car up.  Freddie lay on the leather sofa looking so weak and frail but happy to be going home. Hopefully there will be no more tears of sadness.  Friday 23rd - Monday 27th June  Life has been hard. Freddie's needs are hard. He doesn't talk. He is weak and cannot really walk. He needs to be fed without anything touching his lips.  He is again saying it hurts when he is weeing. I am praying this is short lived and isn't an on going long term problem.  His mouth and lips are horrific - they keep peeling and bleeding. I don't know how to help. Every hour or so I am putting vasoline or Lanolin on his lips to stop them from drying out.  He is in pain and I cannot help him or take it away.  Praying that it gets easier soon.  Tuesday 28th June  Today is a good day. Freddie is more Freddie....
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10. The wake up

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 Wednesday 14th June  I got to the hospital at 8.30am and the nurse said he had, had a good night. Oxygen level was now 25% whereas previously it was between 50-60%.  They are hoping to get his tube out today. I am worried. His skin looks bad still. How will he react. We don't think he is ready. But we also want to see our Freddie again.  At 10.50am the Dr that was on (Liz) decided today was the day and she took him off the ventilator and oxygen just like that. No trip to theatre. No thought about pain relief. Just off and out.  Freddie woke up in a world off pain. Agitated. Screaming. Pulling at his wires. He manged to pull out his NG tube.  It took a good couple of hours to settle him and the only way the managed to settle him was through putting his ketamine back on.  3pm he was finally asleep. His skin all red and sore. He is exhausted. In a world of pain and discomfort. Looking at these pictures. I am not sure why the new Dr decided to wake him....
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9. ICU for 10 nights / 11 days

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 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...
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8. Day 3 in hospital

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 8th June  I had absolutely no sleep last night. The events will forever haunt me. My poor little baby in a world of pain.  The Doctor came to see me and said she probably should have got him in theatre yesterday to do a longer line for his meds. She looked sad. She had heard from the handover from the nightshift just how horrific the events were. No matter how much detail I give about the night. No one will ever understand or comprehend just how awful it was. Unless of course you were there. The nurse that was there said it was her worst shift of her career.  Today Freddie is in a world of pain. His skin his so sore. His lips are swollen. His throat last night looked full of blisters when I saw him screaming.  Today the plan is to get him into theatre to do the following: - Get a PICT line in. They last up to 6 weeks. So we don't need daily cannulas. - skin biopsy to confirm the cause  - Eye examination- he can't open his eyes so they need to examine them ...
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7. Day 2 in hospital

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 7th June  So in the early hours his temperature spiked. Again. They had to give extra medicines to try and get it down.  At 3am he started to refuse to take medicine orally, but with persuasion he finally took his morphine and brufen.  4am and he can no longer open his eyes. They are tight shut. 24 hours in. He is no better. He looks worse.  Freddie is now complaining it is hurting when he is weeing. The ulcers and blisters have started to spread 😞. Freddie is now putting up a fight when they are trying to give him medicine orally. His mouth is full of blisters and sores.  Nurses have said they hope he is better in 24 hours.  Oxygen dropped to 89 so they had to put some oxygen on to up his levels.  All medicines are now through the IV line. Fred can no longer swallow. Tonight I stayed over with Alfie as I am feeding him. He is no bother. He slept in the carrycot of his pram and I wheeled him in the bathroom. It is nice and dark and has a fan for...
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