Steven Johnson Syndrome - The Timeline

 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 ...

 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 ...

 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. Surel...

 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...

2nd June  Freddie was so super excited as we were going on a little trip. To a caravan park. He woke up at about 5.30am because he was so super excited.  Picture above of Freddie and his little brother at the club house at the caravan park. 3rd July  Freddie woke up fine. He didn't have much of an appetite for breakfast but that's nothing out of the ordinary. Sometimes he eats loads. Sometimes he doesn't. We went to play mini golf which he was really excited about. He did really well. His breathing wasn't great. He didn't like being in the sun. But again he has never really liked the sun. Luckily he loves sunglasses.  We then went back to the caravan and his breathing came pretty bad. He was drawing in at his ribs.  So I took him to Carlise Hospital at about 1pm. We were seen pretty quickly. The Doctor examined his chest and said he had Viral induced wheeze, potential asthma.  Freddie has never had issues with his breathing but his older brother and I (his ...

 25th May - 30th May This is when I noticed Freddie had a temperature after coming home from school and falling asleep in his school uniform. I didn't think much of it at the time. Kids get temperatures. They have calpol. They are fine.  Freddie had calpol. He was fine. He went to school the next day.  Each day he then had a temperature that seemed to be fine once he had calpol. He was fine in himself.  29th May  Fred continued to have an on and off temperature and now started with a cough. Hay-fever season. Maybe he has hay fever?  Both his brothers have just had a chest infection. Maybe he has one too?  31st May I took Freddie to the Doctors after being unable to keep his temperature down with calpol and to check his cough, which didn't sound good. He also complained he needed to wee alot but couldn't- so they ruled out a water infection.  Freddie is a funny character - he skipped into the doctors as if he was absolutely fine and shock horror. T...