Another temperature, another obsessive day.

December 21st 2009 started off like any other day but will stay in my memory as the worst day of my life and one that continues to haunt me every time the Boy is under the weather.

It was a Monday and I was really excited as it was my works christmas party for kids so I was taking the Boy (then 13 months) to work to show him off to my colleagues. We had a nice lunch with a colleague and his family and then went on to the party which was fun although after a bit the Boy started getting upset, it was unusual behaviour for him as he was usually a very happy baby but as there were no obvious signs of illness I just put it down to teething and gave him some calpol. Before this day I was a very relaxed parent when it came to illnesses – kids get them and unless something is obviously very wrong there isn’t much to do other than give them calpol, rest and cuddles. He seemed to perk up after the calpol and we had a really nice time together although he seemed a bit unwell again when he fell asleep on me on the train home.

When we got home we sat on the couch together and all of a sudden the Boy seemed really strange – his head was arched back and he was staring at the ceiling and his body started to shiver intermittently. I had no idea what was going on and at that moment the Man walked in from work. He picked the Boy up and after agreeing that he was acting “strangely” we decided to take him to hospital. We didn’t even think about calling an ambulance, we were just confused about his behaviour, so we strapped him into his carseat and drove to A&E.

I took the Boy straight in while the Man parked the car and upon seeing my distress the receptionist led me to the childrens unit and into a room where I lay the Boy on the bed. A nurse came in and after taking one look at the Boy she picked him up in her arms and ran with him into a room labelled “Resuscitation” saying nothing to me at the time – all of a sudden what was a bit confusing and worrying behaviour became totally terrifying. They laid my beautiful baby on the full size bed and he looked so small and delicate and perfect but not like my Boy, he looked like a doll and I felt like this wasn’t really happening to us. Finally the Man came in and I collapsed into his arms, as usual he was my rock. Shortly afterwards the doctors and nurses started asking us questions – how long had he been like this, was he unwell, did he have a temperature and numerous others I can’t remember. They told us that he was having a seizure but that as it had been going on for 25 minutes that they needed to try to stop it so they were going to give him a sedative to see if they could stop the seizure. It did stop the seizure but we were not prepared for the next sentence the doctor would utter: that the sedative had caused the Boy to stop breathing. He explained that they were breathing for him using a hand held oxygen pump which seemed too simple for the job it was performing. The doctor then explained they were going to intubate the Boy so a machine could breathe for him and we watched as an army of doctors, nurses and an anaesthetist put a huge tube into my baby’s throat.

After that the Boy was taken for x-rays and a CT scan to see if the doctors could trace the cause of the seizure and eventually it was suggested that pneumonia was the most probable cause and that the seizure was a febrile convulsion – albeit a complex one given its length. We were then to learn that there are only four paediatric intensive care units in the South East, a fact I would have been happy never to discover, and as the Boy was intubated he needed to be transferred to one of these via a special ambulance collection team.

The ambulance team arrived a couple of hours later and took us to St Thomas’s in London where the Boy was laid on the bed with lots of wires attached wearing only a nappy. There was a blanket on the side and I kept trying to cover him up as I thought he would be cold but the nurses told me to stop. I didn’t understand fully at the time that the cause of febrile convulsions was a high temperature and therefore we should keep him as cool as possible, my instincts just wanting him to be safe and warm. At 2am, after we had been at the hospital for a couple of hours they decided to stop sedating him and reduce the oxygen he was receiving to see if he could breathe on his own but as he came out from the sedation his oxygen levels were not high enough and he was visibly distressed, it took both the Man and I and two nurses to hold him down on the bed to stop him trying to pull the wires out. They sedated him again and decided to wait a bit longer. That night the Man slept on the chairs in the waiting area and I slept in a chair next to his bed, I couldn’t even bear the thought of leaving his side for a second. At 6am they tried again to bring him out from sedation and this time he coped much better and his oxygen levels were around 88% which meant he could come off the intubation machine although we had to hold an oxygen mask near to his face to “top him up”. In the early evening he as breathing much better and we were transferred to the children’s ward. As this was the time of the Swine Flu outbreak and they hadn’t ruled it out as a cause yet we were put in a private room. The wonderful nurses gave us an extra mattress so both the Man and I could stay overnight.

The Boy recovered more rapidly than I could hope for and only two days later we were released armed with antibiotics, swine flu medication and tons of calpol just in time for Christmas. Christmas was very special and we appreciated our Boy more than ever but we were still shell shocked and worried whether it would happen again.

It did, three more times – the following time in February 2010 our wonderful neighbours were babysitting for the first (and last!) time but they dealt with things amazingly and called an ambulance. Thankfully this time the convulsion lasted for two minutes and he came out of it himself. Again there had been no forewarning of illness. The third time was probably the scariest whilst it was happening – 250 miles from home driving 70mph along the M6, this one lasted for 30 minutes and had to be stopped using a sedative (this time they used Diazepam which was inserted rectally as opposed to Lorazepam which had been given intravenously the first time which they think was too much of a shock to the Boys system and the reason he stopped breathing) . The fourth time was another short one of 3 minutes and didn’t even involve an overnight stay in hospital – we were becoming pros! That was in November 2010. Since then the Boy has had numerous illnesses with temperatures but thankfully no seizures.

We were told that most children grow out of them by the time they are 5 or 6 as their bodies are able to cope with the speed of temperature increases. So although we are grateful for every time he is ill and doesn’t have a seizure, those days are filled with fear and anxiety. We hover over the Boy trying to bribe him into taking calpol and stripping him down to his underwear to keep him cool.

Yesterday he was unwell, we’re not sure what it was but he had a temperature, didn’t want to eat and had a sleep in the day (the surest sign he’s ill). All the memories come flooding back and I spent all day hoping he will just get through the illness without a seizure. As they say he should grow out of them by the time he is 5 or 6 I hope we will be able to relax at some point but I wonder whether we ever will. I have also been told that there is a slightly increased risk of Baby Girl having febrile convulsions because of the Boys history so perhaps we will get to worry for a few years longer (sigh).

I have been thinking about writing this post for the past year but haven’t quite been able to do it before now. I still can’t quite believe it happened as it was all so horrible and surreal but I look back now and appreciate the amazing job done by the staff at Epsom hospital on that night. I am also grateful that although all of the seizures were scary and upsetting, we are amazingly lucky to have a perfectly healthy Boy as he has recovered from each episode without any after effects. So although we live with this fear I try to remind myself of the Boys resilience and strength and use this to keep positive. And this is him today, 24 hours after being ill, can you tell?

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8 Responses

  1. OMG, I can see why it was so hard to write. This happening once to you would be bad enough, but 4 times! I’m speechless! Big hugs. I am so wary of temperatures & various health professionals have ticked me off making me feel like I’m over reacting, but I suffered, like your son has when I was a baby & the story my mom told me has stuck with me & haunted me!

    Btw, my mom was a nurse & it still happened & she waited like you did that first time. This weirdly comforts me cause she was fully trained yet it took her a while to realise the extent of it al so I don’t take any chances even if sometimes the way out of hours speak to me makes me cry in the car.

    He is your baby. I luckily only had one & then quickly grew out of getting the temperatures as my body regulated them, so I hope that is of some comfort.

    • Yes, I hope he has grown out of them too, he’s had plenty of temps now without seizures but I’m not sure when we will stop worrying about it.

  2. Wow – I had no idea. How scary for you all! I hope he grows out of it like expected x

  3. God, how frightening! Really hope he grows out of it. You must be so scared every time he gets a fever.

    Massive hugs xx

  4. Reading this sends shivers down my spine … my little boy had a febrile fit at a few months old after a bad reaction to his jabs, it was terrifying and like you I just took him straight to the hospital and they were fab and soon had it under control, but it does leave you with the fear every time they have a temperature. My son developed croup yesterday and went on to develop a really high temperature over night, my son always vomits when he has a high temperature which is scary when they are asleep as we have had some choking incidents so I end up sleeping next to him just for peace of mind (he is 2), I figure it is a small price to pay to be able to reassure him and get him out of trouble if he starts choking as he sleeps on his back and also would alert me if he started fitting. You were very unlucky for him to have the episodes that often and I can understand why it took so much to write it down as it is reliving a terrifying experience in your head. I hope your little girl doesn’t have them but if she does at least you are now experienced and know the best course of action – as most people’s natural reaction is to wrap them up.

  5. What an awful experience. I hope blogging about it has helped. I find that blogging through Erins treatment has helped me get control of my emotions. As a parent of a disabled or ill child I think you are always on egde but you learn to react better over time.

    • I couldn’t agree more, the first time was the worst as you feel totally in the dark but thereafter it is scary but at least you feel like you know what you are able to do.

  6. How awful for you all. Really thinking of you and hoping he grows out of them quickly x

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