Steven Johnson Syndrome - The Timeline

 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 s

  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 remember pleading with me, to get the

 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.  His lips look better - still sore but

 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. Why didn't she listen to

 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

 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 to makes use they are

 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 white noise.  22.30pm Freddie's ca

 6th June  So we stayed at the hospital last night. We were moved onto ward 2 just after midnight. His oxygen was about 94 all night.  His temperature kept soaring and needed medicine to try and get it down.  He was put on IV fluids in the night. He did ask for coco pops for breakfast but only managed a mouthful. His mouth is hurting.  Freddie was asking to go home a fair bit.  His poor lips had ballooned and started to blister... Still managing to drink apple juice which the nurse was impressed with.  He kept saying his lips felt funny and started drooling.  His eyes were itching and he started to rub them again.  8am - his cannula went. He needs a new one.  I returned about 9am after collecting a buzz lightyear sword he wanted as a treat. Little did I know he wouldn't have the energy to be interested in it. He slept a lot. In and out of sleep most of the day. When he did wake, it was abrupt. He would jump up shouting he needed a drink or he needed a wee, then would lay back down.

 5th June  Hours after being told Freddie was fine. I asked my Mam to come and look at him. He was awful.  He was in pain. He was hot. Sleepy. His eyes were becoming more red. His lips were becoming more swollen. He was poorly.  My Mam came round and said "He needs to go to hospital. He is one of the most sick kids I've ever seen. He is seriously unwell." He temperature was 39.5 degrees. He was saying he felt sick. I refused to take him back to Cramlington, so we took him to the RVI in Newcastle. The photos below are hours apart. From leaving Cramlington to setting off to go to the RVI. We arrived at the RVI. It was heaving. So busy.  The receptionist took one look at Freddie and got us booked in straight away.  We went into the waiting room for about 5 minutes and went to triage and from there we were took straight to a bed.  Within the hour, the Dr and nurses had done his obs. Gave him medicine. Took his bloods. Put a cannula in and informed us that they thought he had

 5th June  After being discharged the day before. We thought Freddie would be on the mend. How wrong we were.  The evening of the 4th June he hardly slept. He screamed. A lot. His eyes were itchy. He was coughing. He was in pain.  In the morning I had noticed his eyes had became swollen and so had his lips. He was boiling hot. Again.   We took him back to the hospital. 12 hours after leaving the previous night.  This is Freddie in Alfie's pram. This is what he was like when the Doctor looked at him and said he was fine.  Now. This hospital trip pissed me off. We arrived with him still in his pj's. He was asleep in his baby brothers pram.  The Dr didn't re do his obs. If he had. He would have noticed his temperature of 40 degrees.  He said he looked fine. He was asleep in his baby brothers pram. He pulled down his lip as he slept and asked when the blisters had started. There were no blisters on arrival.  They had just started. Surely. Alarm bells. No?  He said he thought it

 4th June  Sunday morning. We are still on our little holiday.  Freddie slept fine. Though he woke up with a temperature and he didn't like the light. So I kept the curtains closed.  He has missed swimming the previous day as we were in hospital so we had booked in for 9am.  He didn't want to go, then he changed his mind. He went but just stayed in the hot pool.  After swimming we went back to the caravan to pack. This is when things started getting worse.  He started complaining his eye was itchy and he had something in it. I tried giving him wet paper towels to cool them down. He was agitated.  We drove home. Freddie fell asleep while holding a paper towel on his eye. We got home. He lay on the sofa. I asked my Mam to come and look at home. She is an advanced paediatric nurse. She said we needed to take him into hospital again.  She thought he had Kawasaki. We took him in at about 5ish. They did his obs. They did a chest xray. They found he had a chest infection. A nasty one.