true tales from the gates of the underworld


The M word
March 16, 2013, 9:22 pm
Filed under: Life | Tags: , , , ,

We’ve been hit hard by illnesses in recent months. Actually, thinking back, poor squidge has always been prone to catching all the bugs and the incubating them into something nasty. In November he had pneumonia, which took doctors way too long to diagnose, and which made him so poorly I wished I would never have to witness anything similar again.
All of his illnesses start the same way. A bit grumpy at bedtime, then by the time I go to bed a few hours later he is burning up. Daytime brings -some, small- relief from the fever on the first day, only to strike back in the afternoon, and by day two he is floppy, grey and lethargic.
Our last bout, a strep A infection manifesting in nasty scarlet fever that took three weeks and a hefty dose of antibiotics for ten days to get over had only been three weeks earlier.
Monday evening when I went to bed I felt his hot little hand on my arm and thought “oh, no. Not again,”
Tuesday I woke up early to the sound of his panting breath. I counted. 65. I know it’s way too fast. I sit for a little longer. I observe. No improvement. He seems ok, otherwise, but I know something is not right.
The out of hours doctor rings back within twenty minutes, tells me to take him to see our GP who is about to open. I get the first appointment of the day. GP looks in his eyes, ears and mouth, listens to his heart and chest. Counts. 68. Too fast. His temperature is only a little above 38C/100F. She says she doesn’t know why he is breathing so fast but he needs to be in hospital. Do we want an ambulance or can we drive there straight away? We drive.
In the paediatric assessment unit a nurse waves us to the seating area. He doesn’t look unwell enough for a bed yet. We sit. Wait. Squidge sits in my lap, occasionally he tries to move and I notice his arms and legs shaking when he puts weight on them. An hour later a doctor, too young, too slim, blonde, comes to see us. She tells me she doesn’t know why we are there, he seems to have a cold maybe. She counts. 48. I mention the shaking arms and legs, she tells me it must be the fever. I tell her he gets poorly quickly and spectacularly. She tells me she will get her senior consultant to look at him to put my mind at ease.
We wait some more. The shaking increases, now happens also when he is sitting still. He looks pale, subdued, but makes eye contact, even laughs. The senior consultant listens to his chest and sends him for an xray, which shows an infection in both lungs. She prescribes antibiotics and asks for a urine sample before we leave. Of course, Squidge won’t wee on command or in a cup. His temperature is still going up and he becomes slow, yet still shaking. I undress him and stand ready with the pot. His eyes glaze over, his stare vacant as he starts shaking uncontrollably. I call the nurse who says he has a fever and he is sleeping. With his eyes open? His bladder releases a stream of urine that misses the pot completely, but the consultant is satisfied that he does not have retention. He jerks, his eyes refocus.
I dress him, ready to go, and he vomits everywhere. It smells of the antibiotics he had only taken an hour ago. The consultant says it’s the fever, now 39C. Keep giving him the antibiotics and he’ll improve in a couple of days.
We arrive home, and he vomits again, and the shaking becomes stronger still. He can’t walk because his legs won’t hold him, he can’t crawl because his arms won’t support. I try giving him his dose of antibiotics before bed and some paracetamol, and he vomits again. I take him upstairs to give him some milk, and he vomits again. I call the assessment unit, where a doctor tells me to try him with a fluid challenge. 5Ml by syringe every 5 minutes. He takes it, holds it. Falls asleep, but lightly. Moaning, in discomfort. He seems stiff, and hot still. I check his skin; it’s white and blotchy but no rash. 
I daren’t leave his side, so I stay next to him. I phone the assessment unit again and the doctor tells me that I can bring him back if I feel I need to, as I am not coping with treating him at home. I am coping, I just have a voice in my head that keeps telling me something is wrong. Something is wrong. It’s about 3 am when he has the first seizure. It’s a single full body jerk, and it wakes me up. He is burning. Shaking. At 4 am he starts twitching just with one arm, one leg. Then every few seconds his entire body spasms. His eyes roll up and into the back of his head, his breathing rapid. I sit for a couple of minutes and observe. Something is wrong. I know it.
I get dressed, phone 999. Pack a bag while Daddy stays with Squidge, still jerking. The ambulance arrives at 5. I run through our story and they bundle us into the back of the ambulance, and take us to hospital. In the ambulance he still jerks from time to time but the paramedic thinks it’s him trying to fall asleep. I know it isn’t, it happens every minute or so. We go through more details, observe. There drive takes a lifetime, and by the end of it we have plied Squidge with so much anti-pyretics that he has regained a semblance of consciousness.
In the Emergency Department I feel treated like a paranoid mother with her baby who has a cold, until he vomits again. They ask me to try breastfeeding him, but he can’t coordinate his swallowing, and every time he tries it goes down the wrong way making him choke, or vomit more. They bring us rehydration solution to syringe into his mouth, which also makes him vomit. He is shaking violently. The doctor says they will admit him for observation even though he is not clinically dehydrated yet. We go to the ward, and a doctor puts an IV access in his foot. Remembering the traumatic process four weeks previously when Raptor had to have one and it took 4 people, 9 attempts over 2 hours to get it in I was dreading it, but Squidge is now so lethargic he doesn’t even twitch, let alone whimper. Fluids are put up but and we see the consultant from the phone the night before, who listens to me. For the first time I feel someone is taking in what I am saying. Something is wrong. He is shaking, he is still jerking. She calls them myoclonic seizures. She mentions meningitis, which I don’t (want to) believe, surely they are just being cautious. We go for a lumbar puncture straight away. No waiting or messing around. In fact, there has barely been any waiting that morning. Again, he doesn’t even twitch or cry. The consultant looks at him, thoughtfully.
The results do not take long. An hour, maybe a little longer. She comes back to tell me herself. Meningitis. It doesn’t sink in.
They give him steroids to protect him from brain damage, and antibiotics, a big dose. Also fluids as he hasn’t peed since the day before in the assessment unit. They ask me to sit with a pot and try to catch some, which will take five hours and a bolus of 100ml that is meant to stimulate his kidneys.
He sleeps. Shift change, and the next nurse says Of course he is sleepy. He has Meningitis. And it dawns on me; this is real. This is us. He was lucky. My inner voice knew something was wrong. It sinks in. I feel panic rising. Dread. I look at my sleeping boy, tubes and wires and plasters mad curly hair. He jerks. He will be alright, right? The next couple of days pass in a blurr of bleeping, IV fluids and medicines, examinations and sleeping. Squidge sleeps about 42 out of 48 hours, only waking for boobies and a bit of food. He doesn’t vomit anymore, the jerking only happens every few hours, and the shaking is a lot less violent. Awake time increases, and we start hoping for our own beds again. The nurses come in less frequently, steroids stop.
Fresh air, a walk with the mei tai and Squidge on my back. The cannula still flushes beautifully. Squidge polishes off a packet of Quavers while his antibiotics run through. He wants to run, climb.
Things will be ok, for us.
Meningitis.

Are you aware of the symptoms? I didn’t know Squidge’s symptoms were that of meningitis. I didn’t even really know there didn’t have to be the rash, red and non blanching, that we are always told to look out for.
I’ll do a separate post with a list of symptoms so it doesn’t get lost in this story. Please read it, please share it. Please listen to that voice in your head that tells you something is wrong.

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