The First Week of the Rest of Her Life
KaityKSo what does a paracetamol overdose look like? Well first there’s the denial.
“My stomach’s playing up Mum, I started being a bit sick about seven this morning. That’s why I’m sleeping on the bathroom floor.” I know she has stomach problems, thanks Ehlers-Danlos Syndrome, gastroparesis, GERD, MCAD and a whole other host of acronyms that I’d never heard of 3 years ago. It’s ten am. I didn’t know that was important at the time. “OK, let me know if you need anything. Foster child has an appointment in town at twelve, I take it you’re not up to coming. Will you be OK while we’re out?”. She’s seventeen, old enough to know if she needs Mum fussing over her.
Check with her again about eleven thirty before we head to town. Still a bit sick but says she’s OK, doesn’t need anything, happy on her bathroom floor. Thinks she must have picked up a stomach bug at Ju Jitsu last night, she’s a first Dan black belt and coaches in both the junior classes. Germ soup at this time of the year! I don’t know that we’re already at six hours. eight hours is golden.
Appointment is over quite quickly. Foster child doesn’t really like this counsellor, doesn’t use anywhere close to the one hour time slot. Can’t really be bothered with a proper lunch so we go to McDonalds. Quite a long queue but doesn’t take long ‘cause it’s lunch time so there’s a lot of staff on. We’re at seven hours.
Get back not long after one. She’s now being really sick. Every ten minutes sick. Nothing left, nothing staying down, not even water sick. “I think I need to phone the doctor, they’ll know if there’s a stomach bug going ‘round. Can’t be food poisoning, we all ate the same thing last night.” There’s no routine phone cover at the surgery over lunch, emergency line only. This isn’t an emergency, it’s only a stomach bug. I wait until two to ring. Eight hours came and went.
“Hi yes, my daughter is vomiting and it’s getting worse, is there a bug going ‘round? No? OK then, is there any chance a doctor could come and see her, she’s really sick, not holding down water. No I can’t bring her to the surgery, she’s really wobbly on her feet and I’m not sure about getting her down the stairs, she’s four inches taller than me! OK, thanks, I’ll see the emergency doctor when they get here in about an hour or so.” By the time I get off the phone it’s two twenty.
“Hi, thanks for coming, she’s upstairs in the bathroom, sorry about the tent! We had friends staying over and their kids wanted to go camping but the weather was vile! Yes, she’s just in here, thanks”. Being sick almost constantly now. Doctor is concerned. Gives her an injection to stop the vomiting but it makes no difference. They talk for a while, she gives me dioralyte sachets and a prescription for more anti-emetics. Says if she doesn’t stop being sick in fifteen minutes she’ll ring for an ambulance. Daughter asks me to leave the room. She’s very distressed.
Five minutes later GP comes out, blues and twos are on their way. She’s taken twenty grams of paracetamol at five thirty this morning. It’s now three thirty four in the afternoon. We’re at ten hours. I know the time exactly, my smartphone remembers it for me, my heart rate spikes at one hundred and thirty three. Daughter is shaking and crying, saying she’s sorry. She’s been saying sorry quite a bit this morning, I thought it was because she’d been sick on the duvet.
“I’m sorry, I have to leave, I’m the only emergency doctor today”. She’s been with us for nearly an hour at this stage. Ambulance hasn’t arrived yet. Twelve minute response times don’t happen in rural areas. Ask foster child to pack her a bag. Going to have to leave them home alone, husband is on his way home. They don’t know about the overdose so they’re concerned but not panicked. I can’t panic, I don’t have that luxury. I phone ambulance dispatch. We’re not the easiest house to find. They’re three minutes out. I hear sirens in the distance.
Paramedics arrive, they’re amazing, calm, caring, quick. We’re in the ambulance and on our way within five minutes of them arriving. Twelve minutes for a journey that usually takes me 35 on the school run. Her old school is next to the hospital, she used to sneak out of school to go to the hospital café ‘cause the food was good and cheap. By the time we’re in, registered and she’s in a bed it’s just after four thirty. We’re at eleven hours now.
Vomiting is pretty much constant, lots of bloods taken, line in her vein. She has an Autistic Spectrum Disorder, it used to be called Aspergers. Doctor, hospital and needle phobic. They get gas and air so they can get a line in undisturbed and secure. Can’t risk it coming out or not seating properly. IV anti-emetic drugs. They make vanishingly little difference. Bloods come back. It’s just after 5, paracetamol levels are very high, need to start a drip immediately to stop liver damage. The word ‘further’ doesn’t need to be said. We’re nearly at twelve hours. They do an ECG and hook her up to telemetry. BP is 92/55. I explain that she tend to low blood pressure and has POTS. That’s postural orthostatic tachycardia. Another acronym I didn’t used to know. Her skin starts flushing so they give her antihistamine and bring the anaphylaxis kit. It’s a common issue with the antidote apparently. It’s called Acetylcysteine. Another thing I didn’t used to know. Stopping isn't an option.
Anti-emetics still aren’t working, they try another, and then another. Finally a 5th drug seems to help and the vomiting slows. She keeps drinking just to give her something to throw up since she’s going to be sick anyway. It doesn’t hurt as much that way. Every time she vomits her heart rate goes up by forty bpm and her temperature spikes. She’s running a marathon every five minutes.
ER staff are amazing. We have our own doctor and nurse. Husband and foster child arrive. We hide around the corner of a corridor so I can talk to them while a nurse sits in by the bed. They don’t have any psych or emergency mental health support in this hospital but the emergency department staff are amazing nevertheless.
First bag finishes, they hang a second. This one will be up for 4 hours, first bag was a loading dose. It helps the liver process the toxins it produces when it breaks down paracetamol. Those toxins cause hepatotoxicity. The paracetamol doesn’t kill you, it’s what your body does with it that kills you. Vomiting down to every twenty to thirty minutes. That’s a huge improvement. Her arm is still bleeding from where one of the anti-sickness injections went in an hour before. Liver damage stops your blood clotting properly.
Doctor comes ‘round, they’ve found her a bed in the admissions ward, Ward 1. Porter comes and we all follow him and a nurse. Well designed this hospital, it’s just across the corridor. She’s in the room straight across from the nurse’s station. I’ve been in hospital myself enough to know what that means. The door stays open, all cables are taken out apart from the ones on the heart monitor, BP cuff and the drip. Even the power cable for the bed and the emergency pull cords in the bathroom. The bins are in the corridor. Does she have a belt on her dressing gown? I’ll need to shout if I need a nurse ‘cause they took the cable for the call button.
Husband and foster child go home. They both have work tomorrow and it doesn’t take 3 of us to watch a sleeping child. I’m selfish, I can’t leave, that’s why I send them home. The alarm goes off on the drip, time for the third bag. This one stays up for sixteen hours. Should be finished mid-afternoon.
Night staff are fantastic, they bring me a recliner to sleep in but I’ve a dodgy back so I make a nest on the floor from a jacket and a dressing gown. Actually manage four hours and nineteen minutes of sleep according to my Fitbit, I think a lot of that was spent lying very still playing games on my phone but at least my body was resting. She wakes a couple of times to be sick but apart from that manages to sleep about six hours in total.
So now it’s Friday morning and ward rounds. She asks for a plaster for a scrape on her arm from Ju Jitsu which has started to bleed. Doctor accuses her of self harming. I don’t think he believes her. They take more bloods. It’s a waiting game. 20g of Paracetamol and 12 hours without treatment is pretty much on the borderline. We’re down to personal metabolism (high) and for once being thankful for Gastroparesis which means hopefully her body will have digested slowly. It was taken on an empty stomach. We had an early dinner on Wednesday because we were all out at Scouts. She’s a Young Leader with Cubs. She still thinks she’ll be out tomorrow if the drip is down in time. I tell her to text work and tell them she’ll be off for a few days. She works with disabled children and doesn’t want to let them down.
Anti-emetics have worn off, so they inject more into the IV line. They bring lunch but that’s not going to happen. She manages two spoonfuls of soup and is sick. Back to summer fruits squash it is. The alarm goes off on the bag again, drug regimen is finished. More bloods taken. They ask me to leave while they do bloods, I point out that I’m her carer as well as her parent, and I’m definitely not a visitor and the only way I’m not in that room is if another family member is. They roll their eyes, take bloods and we wait. Family come to visit. We make up a story about why she’s in. Bad interaction between some prescriptions she’s on, maybe an accidental overdose. She doesn’t want a fuss. Lets go with that for now. We had a suicide in the family sixty years ago, my aunt shot herself. My mum had to clean up the room after. We don’t talk openly about suicide with the older generation. Turns out my mum can’t visit, she’s sick. I’m glad.
Dinner arrives, fish fingers and baked beans. She manages ¼ of a fish finger and is sick. She tries some soup instead. Isn’t sick again for a while so hopefully some of it stayed in. She’s getting very wobbly from dehydration, her skin on her face and back is dry and cracking. She’s feeling jittery and overwhelmed. Too many people, too many noises, too many changes.
Shift change, lovely nurse from last night is back. She chats and gets daughter smiling. She tells us that liver function is improving. Apparently Child and Adolescent Mental Health Services (CAMHS) want daughter back on their list ‘cause she’s seen them previously a few years ago. She wants the community mental health team ‘cause she doesn’t trust CAMHS after seeing them a few years ago. Not a good start. They can’t see her today. I explain (again) that she actually is under the care of a private psychiatrist after CAMHS said her case didn’t warrant a review this time last year when she was having suicidal thoughts and depression. She last met her Psych on Tuesday and they were so happy with the progress she were making that they set the next review in December. Told me to ring if we needed them before that. I left a message with their secretary while we were waiting for the ambulance on Thursday afternoon. They haven’t rung.
Another late night move, Ward 1 is an assessment unit, we’re now on a waiting game of blood tests and monitoring so we’re off to Ward 8. It’s actually a mixed surgical and Gynae ward but it has a bed. Our shiny new ten ward hospital actually has no mental health beds at all so you end up wherever there’s space. Apparently seventeen year olds aren’t allowed on Children’s Ward. It’s a shame from my selfish perspective because Children’s has beds for parents in the rooms. Hubby brings me an airbed.
It’s a lot brighter in this room, it looks out over the quad which is lit up like a Christmas tree. Looks lovely and I can see the night porter on his Segway. It’s only used at night because it’s too fast in the busy corridors during the day. It has panniers on the sides. She only gets to sleep around twelve because they have to strip all the cables from the room again. They’ll be back for the emergency pull cords in the bathroom in the morning, there’s no maintenance people around and they need a ladder. She wakes up around two thirty Saturday morning to be sick again but this is the first time she’s been sick for about four hours so that’s a huge improvement. They give her another anti-emetic just to be on the safe side. I’ve had about an hours sleep but it was a good sleep and I’m not tired so I look out of the window and play games on my phone.
Just as well really, just after four there’s a crash and everything goes flying off the table, she’s having a tonic-clonic seizure. I call for the nurse but have to run out in the corridor because the call button isn’t there and I can’t remember which button on the main panel is the emergency one. Lots of staff come running. She’s not breathing and her neck is distended, her mouth clamped and rigid. They get a bag with a mask on it to re-open her airway. The seizure lasts around 90 seconds and she’s non-responsive afterwards. They leave a bruise on her collar bone trying to get a response. They have to go and get the oxygen line and hook it up, it’s another thing that couldn’t be left in the room. She’s breathing on her own again but her O2 levels are low. They’re worried about hypoxia. Nice strong oxygen flow on a mask. She starts coming round to bat the mask off her face. Annoying but a very good sign. Reflexes are intact. Post-ictal sleep. They ask if she has a driving licence and take more bloods. She’s now a medical case on a surgical ward but they decide to leave her here anyway. Every OBS check now includes a test for reflexes and pupil response.
Morning dawns, breakfast arrives, she picks at some dry cereal. I go back to sleep on the floor, 5 hours of sleep in 2 nights just doesn’t work at my age and I can’t stay awake any longer. The nurses say they’ll keep an eye on her for me. She’s not allowed to lock the door when she goes to the bathroom. Get an hour. No doctors today because it’s the weekend. Still no CAHMS. They ring to say they’re not coming. I’ve explained to her nurse about her lack of trust in them. This really isn’t helping. She rings them back. Turns out that CAHMS have a policy of no mental health support until after you’re medically discharged. Because of the seizure she is still a medical patient so they won’t see her. They might be ‘round tomorrow. Explaining that at the beginning would have saved quite a bit of anxiety for her because she’s been waiting on tenter-hooks since she came in for them to come through the door. She doesn’t like change and needs a timetable. I ring her dad and explain about the seizure. He’s coming in to visit.
A few more visitors this afternoon, one of her best friends is having their 18th today so they come to visit in the afternoon. She was supposed to be going to the party. They know what’s going on. Turns out she sent a suicide note out via Messenger on Thursday morning. They were all asleep. Very sleepy today, peripheral line in arm starts reacting internally, she has Mast Cell Activation Disorder which basically can make her allergic to anything and everything, she’s allergic to the plastic on the line. They try a flush and realise there’s nothing going in. They take the line out ‘cause it’s useless now and give her cream to take the swelling down. She eats a banana. More friends visit in the evening on their way to the party. Promise to send her any funny photos. Foster child and hubby come in as well, hubby and I head out to a local fast food place while she has people to sit with her so that I can eat. Realise I’ve only had 3 slices of toast and a few cups of tea since I arrived. It’s Saturday apparently. We go to a burrito bar and I have tacos. It’s one of her favourite places to eat. I go to the supermarket to buy clean clothes. I’ve gone down a size in jeans. My size sixteens at home were tight, the new size fourteens are loose. Everyone goes home and I get out the airbed again. We play cards for a while. She’s managed two spoons of soup today.
Sunday is a day of waiting. Nursing staff are lovely. She’s getting bored and scratchy, ADHD is a possibility, not investigated ‘cause so many other things have needed looked into over the years and it’s never been a priority. She doesn’t find being stuck in one room easy. She’s very jittery this morning, needs to get out. Staff give us permission to leave the ward as long as we stay in the building, stay together and she doesn’t use the bathrooms, they have emergency pull cords. It’s a slow morning so we go for a walk down to the café where she manages a sausage and some beans. It stays down! She needs to get a wheelchair back because her legs are too wobbly. She did a five km mud run last week and does seven hours of martial arts training in the evenings. Porter arrives to take her for a chest x-ray. A couple more visitors. They’re starting to blur. The shop had a chess set. I lose! Hubby and foster child come to visit again, we go out for pizza and leave the kids chatting. I’m back in less than an hour.
Nurse comes in at bedtime, do I want a mattress? They have a spare one in the store. I tell him he’s my new favourite person in the world! I now have a mattress, two pillows and three blankets. The mattress is thick enough that I can see out of the window because it comes nearly to the floor.
Monday dawns, doctors are back. Ward rounds at eleven. Meet our doctor, he’s really calm and gentle. Says that more bloods need to be drawn to check for liver function and asks her how she is. She’s needle phobic but agrees. Mood is flat-lined. He tells her that he’s not ready to discharge yet until bloods are clear so no CAMHS today probably. She’s upset. I explain the need for timetables again. He’s spoken to neurology, another department we don’t have. They want an MRI scan and to start her on anti-epileptic medication. They’ll do it as an outpatient so CAMHS can see her quicker. They start giving her ‘either or’ information, a great improvement! Porter arrives again, she’s going for a liver scan. Bloods aren’t great. Needs another bag of antidote. Remind them about the needle phobia so they leave gas and air in the room and page a phlebotomist. Lovely lady, very calm, gets the line in first go and manages to draw five vials of blood. She’s high as a kite on gas and air and giggly. Drip goes up. She wanted the dogs to visit but the drip makes her sick and itchy. Anaphylactoid reactions. Crash cart is close again, along with epipens on the nurse’s station. Sixteen hour bag, might come down depending on the ratio between the blood draws. It stays up. Some of her friends call over after school, they can walk over. I leave them to gossip about birthday parties, I’m sure I don’t want to know! Family coming to visit in the evening with clean clothes and her pillow from home. Hubby forgets to put them in the car so we run home while she has visitors and I eat a microwave meal. My mattress is back again. She’s asleep by ten.
Tuesday morning, ward rounds. She’s a medical case on a surgical ward so the doctor doesn’t come until after eleven. We walk down to the shop to kill time while we wait, this time with the drip in tow. It’s on wheels but they don’t really like going in the lift, they stick in the gap so I carry it in. She wheels the drip cause she can lean on it, she’s refusing to use a wheelchair today. The drip will be over at twelve. More bloods, blow two veins and cause a panic attack. Another bag goes up at three, this one will be up for six hours. They leave it up for eight. She’s a bit more steady on her feet today so hubby brings the dogs with him this evening. She sits out at the A&E entrance where the smokers hide and cuddles the dogs for an hour. We talk about service dogs afterwards and look at breeds. She likes the sound of a Wheaten Terrier. I research where to get a pup from. Mood is slightly manic this evening, she’s organising her Christmas presents. It’s October. Says she wants to get it sorted and organised. Nurses say that’s a warning sign for mood. I know. Still no psychiatric support, not their policy until after medical discharge. They get the phlebotomist again and the gas and air after this afternoon’s fiasco. Bag comes down, more bloods. Needle stays in just in case.
I can’t sleep. This is pretty much the blood test that tells us if the drips have worked. We’re already 1 drip past the extended protocol. The nurses feed me tea and chocolate. I offer to tidy out their store rooms to keep me occupied. One of them gives me a hug. Results come back at three am. Liver is improving but not great, kidneys are OK. Results of tests and scan have been sent to a specialist elsewhere so that the consultant can confirm next steps in the morning. They might want more blood tests. I get to sleep about three forty five.
Wednesday morning they do OBS later than usual, seven am wakeup instead of six. I’m pathetically grateful for the extra hour sleep. She sleeps through it, BP cuff, temperature, heart rate and O2. Didn’t do the eye response check thing this time. Consultant comes ‘round at eleven. Liver scan shows no significant damage to blood vessels and blood tests show signs of liver recovery. I’m not really liking the words ‘significant’ and ‘signs’. He’s happy for her to be discharged provisionally with bloods to be monitored every three days by GP and to return via ambulance if she’s sick, dizzy, has another seizure or gets stomach pain. She’s now medically discharged and can be seen by CAMHS for mental health assessment. It’s six days and six hours since the overdose. We're going home. I'm terrified!
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