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A long hard week… kicking meningitis’ butt!

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So its now Monday morning, I don’t really know much more than I did last night. Well I say last night but we only arrived on the ward about 4 hours ago. To read what happened last night see my post the worst night of my life.

Charlie is stable. His heart rate is down to about 150-170 depending on how he’s feeling and he’s off the oxygen. He is in a lot of pain and cannot stand any light, we have the blinds drawn and the lights off. The nurses have had terrible trouble doing his obs, its clearly hurts to be touched and he is terrified! They are being great though, reassuring me and my little baby boy.

Its surprising how quickly you get used to the hospital environment. the beeping, the monitors, the nurses, the doctors. I think to be honest I totally immersed myself in it. By time my husband got there, I knew exactly what each machine did/meant, what each wire was, what medicines he was on, how often, how much. In my head I was his nurse. I was of course also his mother, I kissed, sang , read and comforted him. But emotionally I needed to be his nurse. I could not let myself be his terrified, grief stricken mother, I would have fallen apart.

The doctors came to see us on the first of many ward rounds. The talked a lot, prodded and poked Charlie, took readings, read his charts. They very gravely told me that Charlie was very ill. That his blood had been sent away for analysis but they were convinced it was Meningococcal septicemia. I didn’t really find out what this meant until he was much better, but I knew it was bad.

The rash all over my beautiful baby was his blood, seeping from his collapsing blood vessels as the septicemia poisoned his body. The doctors told me all they could do was wait and watch, hoping that his body would fight, he would be kept on hourly obs, watching for signs of brain damage. The check his rash, checked if any of his limbs were compromised. Then the doctor asked if some of the rash was new, it was but I hadn’t realised this shouldn’t be happening! The doctors were worried, they told us he could be going up to ITU later, that although on the antibiotics it was still attacking him. They kept telling us he was fighting really hard and doing really well considering, but every time we responded with a smile they would say that he had a long way to go and was very poorly! I have recently found out that most children bought in already exhibiting the rash end up in the ITU and a high number leave the hospital with lasting damage.

Monday was a long day. Watching that horrific rash cover my baby more and more, every time I looked at him i saw more. He couldn’t eat or drink so was on fluids too, he was so weak, so tired. He was helpless, in pain, frightened and there was nothing I could do.

The next day or so were filled with worry. Not only was the rash still appearing but Charlie was unable to wee and was therefore swelling. By Tuesday he was so puffy he could barely open his eyes, poor little boy. The doctors were worried his Kidneys were not working properly and he was given diuretics to help him release the fluid. The doctors also said that his blood was no longer clotting, hence the ever increasing rash. I was pleased when they said he didn’t need a full transfusion but he did have to have a platelet transfusion. My poor little baby, its seemed as if his poor little body was just shutting down.

However even though on paper he seemed to be having more and more problems, my little Charlie seemed to be returning to me. Up until Wed all Charlie had said was mama, not like he normally would but like a baby babbling, he hadn’t been talking at all. But by tues evening/wed he was starting to say the odd thing, he also seemed to be awake for longer periods of time. He was giving me hope. He wanted to play and watch tv. He didn’t really play but the nurses made him some playdough and I made things with it for him to look at. Each day he seemed more bright, more awake, more Charlie.

Wednesday evening I decided for the first time to sleep in my bed in the corner of the room instead of holding him through the night. He seemed to go to bed Wed night like a normal little boy, He got tired, watched some tv then fell asleep. The nurses had also told me he was now down to 3 hour obs and they no longer needed to check his eyes (looking at pupil dilation for signs of brain damage).

Thursday morning. I will never forget this morning. He woke up, bright as a button. “I’m thirsty mummy” he said. I quickly got him a drink. He smiled at me…he smiled!!! This was the first time he had smiled all week. I have never felt so much joy in all my life. He was still swollen, but not as he had been. The rash was still there but had started to fade a little and was no longer appearing. I text my husband to ask what time he’d get there, I didn’t tell him how well Charlie was doing.

He arrived a little later, as he walked in Charlie said “daddy” and a massive beaming smile appeared on his face. I have never seen my husband look happier. We sat chatting to Charlie, chatting to our boy who only days previously had been fighting for his life, his body bleeding into its self, his organs unable to cope.

The doctors came and told us he had turned a corner. Off came the heart monitor, off came the sats monitor, they unplugged his drip! I couldn’t believe it. It all happened so quickly. As quick as the disease had gripped his little body, he seemed to have bounced back. Later that day he was allowed out of his room and into the playroom. He couldn’t really walk properly but couldn’t wait to play. A little later he was moved to a ward. Suddenly I had others parents to talk to, other things to look at. Charlie seemed to much prefer the ward and he was finally starting to talk to and interact with all the nurses. My little star.

After some concerns over His ability to walk and a scare with his rash reappearing (he was still having clotting problems), we are now home and dare I say it fully recovered. I cannot believe how lucky we are. Charlie is still anemic and gets tired very easily. He had still got to undergo tests but at this point no lasting effects are expected. His skin is still mottled with the scars of his rash and he has lots of large bruise like patches and scabs. But all in all, he is better, he is Charlie, he is home.

I am so thankful for whoever was looking after Charlie, the nurses, the doctors, the well wishes, the prayers, god! Whoever played a part in saving my boy, thank you. I feel like I have been given a second chance. After giving birth to Charlie I suffered PND and did not form a bond with him, in fact I have barely any memories from his first year. This is in fact another post I have in draft that I have been trying to finish for a long time. Although I have over time developed an amazing bond with Charlie, I feel our time in hospital allowed me to have with him what I and he missed out on when he was a newborn. I have to take something positive from it. I got to care and nurse for my baby.

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To anyone reading this I want to get through to you that ours in an exceptional case. We have been told by doctors that Charlie is very lucky and some said they have never seen a recovery like his. This is a happy ending but unfortunately it is an uncommon one. In cases of bacterial meningitis 1 in 10 will die and a 3rd of survivors are left with permanent damage including loss of limbs, brain damage, blindness, deafness and learning difficulties. Please make sure you know the signs. The rash is the last symptom to appear. Its is often called the grave rash, as the grave follows the appearance of the rash!

Here are the symptoms you need to look for;

  • A very high temperature with cold hands and feet
  • refusing food/vomiting
  • fretful, dislike of being touched
  • floppy, hard to wake.
  • rapid breathing/grunting
  • unusual cry
  • dislike of bright lights.
  • stiffness in the neck (check by trying to get child to put their chin to their chest)
  • Convulsions
  • Lastly the rash. Blotchy skin and/or the appearance of a red/purple rash that doesn’t disappear under pressure (do the glass test)

These are the symptoms in babies and toddlers, for more information please see www.meningitis-trust.org

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Worse night of my life….

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I’ve been trying to write about this for a while now, I’ve been struggling to find the words, the strength and the time. Our world was rocked so tremendously recently yet to the onlooker it appears to have left now physical scars. You are probably wondering what an earth I am talking about, so let me start at the beginning………

Sunday 2nd June about 1pm

Sitting watching tv with the kids and my little lad, Charlie (2.5yrs) starts wobbling towards me crying. Oww oww he’s saying in between tears, he’s also walking funny. My immediate reaction was that he was trying to poo, he sometimes suffers constipation and often walks that way when he’s trying to go. I picked him up to cuddle him and relaised he felt a little warm. I cuddled him for a while expecting him to go to the toilet, but he didn’t. Over the next hour or so he got really sleepy, still crying and still hot. So I made him a little bed on the sofa and laid him down.

“are you poorly little man?” I said to him. He didn’t reply, he looked quite sad, he then fell asleep. I text my husband to ask how he had been in the morning as I had been out taking my eldest to the cinema and he was now at work. He soon got back to be saying he had been fine, running round in the garden all morning. I told him he was now poorly and lying on the sofa and sent him this picture…

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Charlie spent the rest if the afternoon in and out of sleep, crying every now again saying ow. He seemed to have a temperature, although I had no thermometer to check for sure but as a mum you can usually tell. I hate it when my kids are ill, i’m sure all mothers do. I’m a bit of a worrier so keep them close when they are. Due to this charlie stayed with us for the rest of the evening, with no improvement. I then took him up to bed in with us and cuddled him to sleep.

Sunday 2nd June about 1am.

Charlie woke screaming, unsettled, not making any sense. He was both floppy and jerky all at the same time. He was babbling gibberish. He was hot, very hot. Amongst the babble I made out the word drink so got hubby to get up to get him one. He seemed to be getting hotter by the second, I sat him up and removed his top, I needed to cool him down.

For a second I froze. Guy I said, stop, as he was about to leave the room to get a drink. There was a rash, starting to appear on his chest, red and purple, dark… I grabbed a glass of the bedside table and pressed it against his skin, no change. “Get me a phone, quickly” I said to Guy. How I was able to calmly say that I will never know.

Shaking a rang 111 (nhs direct). Guy took Charlie as he was still crying, still confused, still getting hotter. After answering some questions the lady on the phone said the paramedics were on their way to us, told us not to let him get cold and take him downstairs and put the lights on. I have honestly never been so terrified and full of adrenalin and yet so calm and controlled in all my life.

The paramedic arrived, by this time Charlie was floppy, still conscious and the rash was spreading all over his body. The paramedic took one look at him and radioed in with the words “we have a hot one, repeat a hot one”

He then attached a stats monitor (measures blood oxygen levels), I don’t remember the reading but he put him straight on oxygen. He then added a heart monitor and took his temp. It was 40.7 I will never forget that, I have never know a child that hot. He then told me very seriously that Charlie was very ill and he needed to get antibiotic into him straight away.  I agreed and he did it. He then told me that an ambulance was on its way and we needed to be ready to go the minute it arrived.

The ambulance arrived and I carried my poorly baby half naked covered in wires and a horrific rash into the back. I said goodbye to my husband as he had to stay with the girls and off we went. We arrived at the hospital after a surreal journey spent telling charlie about the ambulance (not that he could hear/understand me) and making small talk with the paramedics. It wasn’t as I imagined the doors opened to a quiet place with a secret looking back door, we went through the door which lead straight into the ER. There was a team waiting for us. I laid Charlie on the bed and they took over. More monitors, more drugs, lots of questions and then we wait…..

He had a heart rate of 210, at the time this meant nothing to me but I now realise it was about double what it should be! We had to keep calling his name and keeping him conscious. If he started to loose consciousness/responsiveness the anesthetist was waiting beside him to intubate and rush him to the ITU (intensive care unit) I stood there, in my pyjamas, suddenly very cold and sick, my head swimming, I felt like I was going to collapse at any moment. But I couldn’t, I couldn’t leave Charlie. The doctor asked me if I’d like to lay on the bed to comfort him. I think she knew that if I didn’t lay down I was gonna fall down.

4am.

They decided he was stable enough to go onto the ward and they sent the waiting anesthetist away. I stayed on the bed, they wheeled us to the ward. We went into a private room, next to the nurses station. I looked around so many machines, so many wires, so many noises…. my poor little boy. Everything in the room beeped, every time he moved some alarm went off. A kind nurse came into the room, I have no idea who she was, I know it was one we got to know but I cannot remember who. She told me she’d be looking after us, made me a cuppa and got me some food. I think it was then that I first heard that word said to me “you understand we think he has meningitis”. “Yes” I replied, confirming my worst fear.

After calling my husband to let him know what was happening I lay down next to my boy, my poorly poorly boy. I didn’t cry, I couldn’t. I wouldn’t allow myself to take on the enormity of what was happening, I just stroked my baby’s hot little head and waited for the nurse. Charlie was frightened and confused and was on hourly obs so it was gonna be a long night……..