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Joey's story

28th April 2016

Little Joey’s illness became apparent during a trip out. Joey, from Taunton in Somerset, went to hospital with meningococcal MenB, but was subsequently given the all clear and discharged

Joey's story

However, following a relapse he was readmitted to hospital. Mum Lauren tells their dramatic story.

“On Good Friday we thought we would take a trip out to York with our close friends.

“Joey, our 4-month-old son, had been poorly for over a week, with previous admission to Musgrove Hospital. They told us it was just a virus and sent us home with advice on cough medicine from Asda and regular Calpol. This is what we did for seven days.

“So, as Joey had seemed to pick up, we thought we would take him out for a day trip. On the way there Joey woke from his nap screaming (pain scream, I thought it was just wind). We managed to get him back off to sleep in the car so we continued our journey.

“We got to York and got Joey out of the car. It was a warm, sunny day, with the sun shining brightly. Joey started to scream again in discomfort. As soon as my husband put up the parasol on his pram Joey seemed to settle again. All through the day he was sleepy, whingy, crying and clinging to me. If I put him down or passed him to anyone he would scream - he just wanted to be cuddled in to me. (This is quite normal for Joey with me).

“He was running a temperature, which was up and down all week so we gave him Calpol, but it only slightly brought it down.

Limp, unresponsive episode

“My husband and I decided we should take Joey home, so we headed to the car. As we got to the car and I went to put him in his car seat he had a limp unresponsive episode for around 10 seconds – it seemed like forever.

“He came round and started screaming. At this point I was scared this was something more than a virus. My husband drove us home where we met his parents and my dad. Joey had slept all the way home in just his vest as his temp was 38.7.

“When we got in the house Joey started to make strange grunting and high pitched noises. His body was really hot but his hands and feet were freezing. He wouldn't settle even with me, so my dad drove us to Royal Bolton Hospital children's A&E, who took us straight through to resus.

“At this point I didn't really know what was going on. I was just scared as I know resus means it's serious.

“Joey’s temperature was 38.9 at this point and his heart rate was 210 bpm. The doctors rushed in and did some examination and sent us for chest X-ray, bloods and urine samples. They then told us they weren't really concerned; they thought it might be flu or bronchiolitis, so I calmed down slightly.

Deteriorating hour by hour

“We were admitted and taken to the children's ward. Joey was monitored regularly overnight by the nurses. He started to deteriorate hour by hour - he had low blood pressure and high heart rate, his temperature was spiking to 39 and he stopped feeding, resulting in them having to pass a NG tube in to his tummy.

“He just slept all the way through everything, waking the odd time with high pitched screams. I sat up all night watching my son as he got worse and worse and I knew there was something more.

“Morning came round and the doctors came in to see my husband and me. They explained that they still thought it was a virus, but to be on the safe side they decided to do a lumbar puncture. We then waited all day until 5:30pm until they came for Joey to do the procedure.

“Jason, Joey’s dad, took him while he had it done. Ten minutes later they were back and five minutes later the doctors came straight in. We sat with our parents as they told us Joey's spinal fluid had drawn back cloudy, indicating he had meningitis.

“We were all in complete shock and devastated. The doctor spoke a lot but I can't fully remember everything he said as we were all in floods of tears, as our little boy just lay there deteriorating. The doctors and nurses said they had to work fast to control the meningitis and they had sent further samples off to Manchester Children's Hospital to determine which type of meningitis he had.

Worst nightmare was confirmed

“Three hours later they were back and our worst nightmare was confirmed - it was meningococcal MenB. Joey also had swelling to his spinal cord and brain. The nurses and doctors of Bolton Royal started the treatment straight away and later sat us down and went through everything again. All our family came up and sat with Joey for the night as he was really poorly. The next day he seemed worse and we feared for his life.

“They prescribed him steroids to help with the swelling in his brain and to hopefully prevent permanent damage. As the days went on Joey started to come round and on day four he started to feed again. Things were looking up and we were all over the moon. Joey was reacting like he should, following sounds and we could finally open the curtains and let some light in.

“On Saturday 2nd April we were discharged from hospital. The doctors were happy with him and said he was in the clear. On the Sunday they sent out a community nurse to check on Joey and he was re-admitted to the ward as his temperature was spiking again. The doctor said it would just be the aftermath from everything he has been through and he would not be 100% himself for another few weeks.

“We travelled home back to Taunton in Somerset on the Monday. Joey was still under the weather. That night I put him in bed with us and I woke up at 2am with the heat that was coming off him. I took his temperature, which was 39.4, and I woke my husband. He opened the window for us, we stripped Joey down and stood at the window until he cooled down. I gave him Calpol and re checked his temperature, which had come down to 37.6.

Something isn’t right

“The health visitor came out to see us in the morning and I told her that something wasn't right. Joey was screaming again, didn't want to be touched and just wanted to sleep. She rang our local GP, who saw us straight away and told us to go straight to the children's ward at Musgrove.

“Jason and I were devastated again, thinking that the meningitis hadn't completely gone. Joey had further tests done, including MRI scans, ultra sound scans to his head and bloods. The doctor came back to tell us his infection level was high again and there were two collections of puss cells on his brain that were infected as a secondary to the meningitis.

“Heartbroken, we held our heads up and continued with another seven days in hospital on IV antibiotics. Joey had to have a long line put in his arm. This meant he had to be put to sleep in theatre. Bristol hospital neuro surgeons were now involved.

“After seven days we were allowed home with Joey’s line in place. This meant that nurses could come to our house and give him a six week course of antibiotics, which we are now halfway through.

Ongoing treatment

“Joey is due to have another brain scan on 10 May to see if the puss cells on his brain have shrunk. If they haven't this will mean he has to be admitted to Bristol hospital to have brain surgery.

“My son in now 5-months-old and is still going through the works. We don't know the permanent issues he could be left with until he grows up and he has to have more tests done - hearing test, development test and he will be under the hospital for regular check-ups until he is 2 years old.

“I hope our story brings awareness of this horrible illness. As parents follow your own instincts; you know your child more than the health professionals do.

“Reading other people’s stories on your website makes me feel that we are not alone. Also the advice on Meningitis Now’s website is helpful, allowing me to keep checking up on the aftermath of having meningitis.”