What a week. It seems lately that every week or so there is always something dramatic going on or something rubbish happening. I’ve been working hard on remembering to take my meds, and to keep plodding on and be more upbeat. But when life starts throwing threatening illnesses and diagnoses at my child, cars breaking down, and whatever else has happened lately it really starts to get you down.
At the weekend we tried to go to a BBQ we had been invited to. I was really excited to go and there was a paddling pool and bouncy castle there too. But I knew Amy wasn’t 100%. I wasn’t sure what sort of illness she was brewing but I did notice in the morning that there was a mild tracheal tug going on. I put it down to hayfever and a cold as her eyes and nose had been so runny. So I medicated her up and decided we would go anyway and if she wasn’t up to it we wouldn’t stay long.
We had been there less than an hour and she was looking awful. We put her in my friend’s daughter’s bed to let her rest, put some videos on for her and watched her. My friend’s child has loads going on medically so we checked her sats and obvs (temp, resps, oxygen levels etc). Her heart rate was really fast and her temp was very high. So we rang the hospital and asked to have her assessed.
Once we got there I was adamant that what we were seeing was a chest infection. I told the doctor she didn’t need an xray as he could hear that she had a strong crackle on one side of her chest. We all agreed oral antibiotics be prescribed and then us all go home.
The nurse came in to do a final set of observations before sending us home. The sats showed as 82. We were so shocked. Sats are usually 99/100%, anything below 92 is cause for concern and usually a person is put on oxygen. The doctor literally ripped up the discharge letter and got us admitted to an open ward.
Amy was put on oxygen but this wasn’t bringing her levels up enough. A salbutamol nebuliser was given, blood gases tested, a canula inserted for antibiotics and fluids (took 4 goes poor thing) and optiflow oxygen started (wet/humified oxygen). It was so alarming. I haven’t seen her fight for her life like that in a very long time. We are used to fairly regular chest infections but nothing like this.
Eventually she stablised and she was left on the optiflow and maintaining decent sats levels. Our pediatrician happened to be working that night and came in to see us.
“Amy’s results are back from her EEG” she said. I felt a bit sick. I have been waiting for these results for a few weeks. We know she had that one big seizure, and I know that for a few months I’ve been constantly saying how amy is different and doing “strange” things. But I really thought the EEG wouldn’t have picked anything up and that either she wasn’t having seizures, or maybe she needed a 24 hour EEG.
“The EEG showed that she is having A LOT of unwanted electrical activity”. So in addition to her rescue meds she now also has sodium valporate twice a day. Her trihexiphenidyl was also swapped for levadopa. It was devastating. Seizures were the one thing we thought she had escaped on this whole cerebral palsy journey.
Day by day she is getting better and we only stayed in a couple of nights. She’s still on antibiotics but just through her tube and not an IV.
It’s all been really tough. She’s not been at school this week… she was only in one day last week too because of her GJ change at the city hospital.
I really really hope that as the meds get increased week by week we start to see our old Amy again. I miss the smiles. She can be happy.. but not like before. Something is stopping her. Obviously I am worried also about her getting bad side effects from meds. The picture I put up there is her 8am meds from this morning. I can’t believe how many syringes of meds she has each day. I am on a bit of a downer about it all and still processing it and aside from that there is a lot of other stuff going on in our lives… I just hope soon things settle and we can start to build nice memories again and be happier. I know Phil is struggling too. Just want everyone happy and well.
I have so much more to ramble on about, but I need to get myself ready to pick her up from respite. Haven’t really stopped today, been playing catch up. Should have a nice weekend though, got lots of nice family stuff planned.
Hey everybody. I am really not doing well today.
I guess it has been a rough few months really. I just emailed Amym’s (my daughter’s) pediatrician to see if we can bring her appointment forward.
Recently she has got into a lot of self injurious behaviour. I have literally no idea why. It could be epilepsy, could be sensory, could be behavioural, could be frustration/communication issues. In the last hour she has caused her chin and neck to bleed in spite of my best efforts to keep her safe. School and respite put socks on her hands and make sure she can’t do too much damage and I’ve been making a more concentrated effort to keep her nails trim and smooth.
Her athetosis has been absolutely wild. If I lay her on the floor she pretty much thrashes and bounces with such momentum that she goes flying onto the hard wood floor or flips onto her tummy and gets stuck. She can kick her legs so hard that her whole body twists round and she can smack her feet onto the floor or radiator. The room is as padded as can be, and we have a new high sided bed on order. But I feel like lately instead of raising a happy little girl and helping her with physio and speech and language… I’m just safe guarding her constantly and trying to prevent meltdowns. I don’t know what I am doing wrong or what I could be doing differently.
Since the seizure this has all started and I am not sure if there is a connection. I am still waiting for EEG results and have left some messages/sent some emails to chase them up. Though I half suspect they’ll come back fine and we’ll need to do a longer EEG.
We are also waiting for a different hospital to give us a second opinion on long term feeding options. Right now she is 24 hour GJ fed. (Trans gastric jejunostomy). Yesterday she had a routine GJ change but the first lot of sedation failed and she had to have a second course which unfortunately was a rectal one (called formaldehyde). Sadly this was too much and she wouldn’t wake up for 5 hours. The day case ward started to close around us and they allocated us a bed on the short stay unit. Eventually we managed to rouse her enough that they would let us home.
These routine changes happen a few times a year. The risk of sedation and the missing of school are a quality of life/safety concern for us and we know that this can’t go on. Surgeons recommend EGD surgery (total oesohphogastric dissociation) which is basically separating the oesophagus from the stomach and re-routing it to the jejunum (intestine/bowel). It is major, major surgery, and one that I don’t feel she is a suitable candidate for. I feel a separate jejunostomy would be more appropriate but obviously I have no medical background so it’s just a hunch. So we are going to hopefully seek a different outcome from elsewhere. I totally respect what the first hospital have advised, and I get that they deal with motility/gastric issues way more than I ever could… but at the same time I am a mum putting my daughter’s life in someone else’s hands. No decisions like this are made lightly and her comfort and quality of life will always be at the forefront of my mind.
On top of this there’s a few other issues going on, I know it’s tmi but I had cystitis last week and generally felt grim. This week I thought would be a bit better but the whole GJ thing and keeping Amy safe has been a tough pill to swallow. I did a self help referral recently and I have a phone interview next week for it. It’s a 45 minute one and I have a questionnaire to do first. I’m nervous, but I figured my anxiety clearly isn’t going away with medication alone and maybe there is something else I can do to try and get better.
Yesterday as we walked through the hospital two nurses came past with a small incubator. They were heading to the NICU (newborn intensive care) where Amy was transferred when born. The child was fully ventilated with every tube and wire going. Loads of monitors. CPAP hat. The works. It hit me out of nowhere. I nearly fell to the ground. My legs went like jelly, my chin wobbled, and I immediately cried. I forget sometimes what we came through and how hospital life will always have these random triggers for me. My mum was with me and I was so glad. I think it hit her pretty bad too but she managed to stay composed for me and be the rock that I very much needed all day yesterday.
I am hoping to see my dad in the next few days… his work shifts are such that we sometimes get a nice dog walk in whilst Amy is at respite. Seeing my parents is so important to me and a real highlight every week. Also Phil is now off on sundays and I am hugely pleased about this. We might be going to a BBQ on sunday so that’ll be cool.
In the time since my last post we have had lots of nice days out and actually lots of positive times and nice memory making. I know I come here and can be really negative, but I do have good days and there is still so much to be happy about and grateful for. It’s just one big mental battle sometimes.
Anyway. I guess that’s it really. Just wanted a little vent at everyone. Time now to get on with making tea and getting Amy to go to sleep. She’s had her meds but is presently somehow calm in her bedroom with music on. I am enjoying it whilst it lasts!
I feel calmer today. Phil is off work.
A simple thing such as changing GP seems to have caused me a lot of stress. I guess because medicine is a huge part of my life now and collecting prescriptions, keeping stocked up, ordering tube feed supplies etc is a daily thing. I like to be overstocked if anything so you know you are prepared. Some of the meds come from hospital, some from pharmacy, some meds are controlled meds and can’t be ordered online, and some meds need special training and to be pre draw and taken everywhere.
I sometimes genuinely wonder how on earth I filled my days before we had Amy.
My nightmares are still really bad. When all signed up for the GP I need to try and tackle it. I’m waking up panicked and exhausted most days. Last nights one (the bits I remember) were sort of hilarious in a way. I dreamt it was my dads’ Birthday and that to celebrate we staged a zombie escape day. There were 100 “zombies” (people dressed up) and 50 civilians (i.e us). Annoyingly the zombies could track us on these infrared tracker things.. we only got 10 seconds to get ahead of them and they weren’t allowed to run. I refused to do it saying my anxiety was too bad so I stayed at this lodge thing. As the game went on, more and more people returned to the lodge missing chunks of their arms, limbs, all sorts. I started to realise it wasn’t just a game. This then turned into me genuinely fleeing into the forest searching for my family in a frantic panic. People were hiding inside man-made logs unaware that the zombies could track them. It was petrifying. The night before was some sort of torture escape one, and that one really was scary.
Irony by the way – I just had a call asking if we need any feeding supplies. Ha. A while ago I did actually tell them to stop calling.
I overdid it with the lifting of Amy over the weekend. Did lots of helping her walk by fully supporting her body and shifting her weight on each leg so she sort of walks. It’s hard work for both of us but it’s nice I can give her that sensation and also physio recommends it. But my back is paying for it two days on!
Tomorrow I start doing some mystery shopper typed things. I need the spending money.. every time I get a phone bill it’s like arghh. All carers allowance and DLA goes to paying bills and also to all the extra things we need to buy for Amy (probiotics, bibs, gtube pads, stuff like that). Phil works so many hours and that pays for the petrol and all the bills and rent… but I hate feeling guilty if I want a coffee somewhere etc. Working full time weirdly gave me a freedom I never knew I had. Hopefully I’ll hear about the voluntary work soon too.
Anyway. Sort of just checking in. Amy has her EEG today. Her first day back at school after school holidays and the poor thing gets dragged out to have probes put on her head. I am part nervous, but mainly expecting her to not be having seizure activity. I think the big one she had is either a one off, or it will happen in a few weeks or so and therefore not get picked up on. We shall see.
Life at the moment feels like when you’re trudging through thick mud. You’re getting somewhere, albeit very slowly. Every now and then an obstacle is thrown in to intensify the challenge and you continue because you have no other choice but to force your way to the direction you need to head in.
You look to your sides and the paths of others seem relatively struggle free, if anything they enjoy their terrain joyously with flashing rollerskates on as you wish your shoes didn’t have holes in. The holes let the mud in and start to fill your boot, your socks get wet and the mud adds weight to your already dragging, aching feet.
Honestly. This last few weeks feels like it has added about 20 years age to me. My whole body aches. I’m not getting a lot of sleep. It is either interrupted by crying child, or by my own nightsweats/night terrors.
I woke up today a bit disorientated because Amy isn’t here. She’s at respite. I feel relieved that I don’t need to do the whole lifting, fighting to dress her, cleaning of entire bedding set etc like every other day, but I feel a grieving feeling, and a guilt that she isn’t here. I feel bad that I can’t just do it all myself and that I need that additional help. I rang to see how she is, and she is fine. They said that yesterday was a different story – she was inconsolable, very agitated. Her behaviour lately is so up and down. Since she had that big seizure, and the few weeks running up to it, I have seen a big change in her. She is either almost sedate, non reactive, non sociable, a bit “out of it”, or she is angry… literally ripping her hair out, cutting her face, thrashing around screaming. It’s exhausting to watch, and probably more exhausting being her.
I’ve been struggling to get her the care she needs. The unreturned phone calls, the constant leaving of voicemails, the paperwork, the appointments we’ve missed or had to rearrange. To put it bluntly, it feels like people simply don’t care. We are changing GP. They declined one of her prescription requests the other day, and when I really needed an appointment for myself they couldn’t offer one. I just hope that this next one isn’t somehow worse. Amy has a controlled medication and loads of other ones and I usually need to collect a huge order once every few weeks. Some of her medicines come from hospital because our last GP refused to fund them. So like is usually like one big treasure hunt for meds you don’t want her to need, and also are not sure of the long term effects, or even if they are presently effective.
Whilst I had her yesterday her athetoid (involuntary) movements were uncontrollable. Her arms were like propellers and her mouth movements were reminiscent of seizure activity. I know that she is frustrated – she can’t verbally articulate her wants and needs, so to get her message across it can often come out in the form of lashing out – hitting, kicking, scratching and pinching. Trying to anticipate her needs causes me so many different emotions – frustration, sadness, hope, desperation, exhaustion, so many things. i hope that because we are only 4 years in that one day it will get easier. I am already working on getting her some bigger, and more relevant PECs symbols and though at times it seems futile as she won’t always register them, I guess if we don’t try then things will never change.
I have tried lately to pull myself out of my shell, to try and be my own person more and cultivate some new interests. I was already growing veg (mainly for guinea pigs) and going on lengthy dog walks… but I started rock painting, and also geocaching. The rock thing is getting me down slightly as it seems to be an amazing bonding hobby for parents and their able bodied children. I am still going to try and get Amy interested but right now the awareness just isn’t there and she is quite reliant on music or videos to soothe her. She loves being out and about, but we shall see how we go. I will try to collect some rocks and see if she will help me with painting them. Crafts and baking etc seem to not interest her, but I suppose she wants to do things that her motor skills DO let her do, she knows her limitations and she knows what she likes. Seeing people post how excited their kids are when they find the rocks, or when their rocks are found makes me really happy, but it also shows what we are missing. I noticed lately on our travels that children are starting to stare at her more. I guess the developmental gap is showing, and she is too big to be mistaken for a baby in a pram. I find the best thing to do is to try and open a dialogue with them “Amy, that little boy is looking at you, are you going to wave hello?”. I hate doing it, but I need to bridge that gap and teach people that just because someone is different we do not distance ourselves or stare.
The geocaching is harder because my phone battery dies so easily haha! It is however very exciting when you do find one.
I feel a bit like a tree that has been uprooted from the ground, and my feet are trying to reroot so I can ground myself and feel like part of the earth again. No matter where I go or what I do I feel entirely detached, almost like an alien observing the human species. I can interact with these people, I can forge polite conversation, but then I retreat to my internal monologue “they don’t get it. they don’t understand.”, “you’re annoying people, you’re pointless”. Seeing people park in disabled bays without a blue badge is enraging me… seeing ignorance and lack of compassion in the world is something that affects me deeply. I wish it didn’t, but it does.
You know when you’re a child and you do that thing in your classroom chair when you tip yourself backwards? Eventually you tip it just that notch too far and give yourself a shock… I feel like that A LOT at the moment. That jumpy, on edge feeling that something bad is about to happen. The calling an ambulance thing last week has triggered this, I have never been so scared and shaky in my life… and yet I know there are people out there who do this everyday for someone they love who has medical issues. I keep panicking that someone I love will get suddenly ill, or worse. And I want to constantly know everyone is okay because I cannot bear the thought of something happening to them. There are a lot of incredible people in my life who deserve nothing but happiness, love and success, and yet they are daily having challenges thrown at them. It just isn’t fair and I wish I could help. I feel so powerless to fix so many things that aren’t right in our lives.
I’ve tried improving my diet. I haven’t launched into a full blown diet as that will set me up to fail. But I have gained a lot of weight and am trying to make positive steps to improve. I have lost 7 pounds now in 2 weeks. I’ve taken some “before” photos in the hope that in two weeks I start to see a difference. I think I do already but the main point is to get more energy and feel better in myself… I’m no longer about trying to look amazing… it doesn’t work with my current eczema, anxiety and eye problems! Haven’t even been able to wear eyeliner in 3 days which is unheard of. I am also planning on some voluntary work. The school wanted parents who can help parents of newly diagnosed children, and the idea of making those early and confusing dark days for people even a tiny bit easier fills me with hope. So that will be good. My self worth is shot not having a “real” job. I miss the busy office, I miss the adult conversation and the banter (hate the word banter), heck.. I miss the money!! Carers barely get paid at all, there are no sick days, no holiday, and making plans you can commit to is hard… you just never know what could happen even an hour from now sometimes. It’s lonely, and it’s physically and mentally exhausting.. as I have found to my detriment this week as I have burnt out.
I referred myself for help the other day… it’s a self help thing that I think is linked to the NHS. I did it once already to help me with the grief from the miscarriages but I wasn’t in a place where I could try to fix myself. A few nights ago I had such a vivid dream. I was surrounded by people I know and they said “cez, we have someone here who would like to meet you”, and from behind them stepped out this beautiful little girl. She had long blonde hair, a frilly top, and leggings. She looked so alert and full of life. “Hello, who is this?” I asked. When suddenly, in the pit of my stomach I started to feel sick. “This is Millie.. you never did miscarry… we didn’t think you would be able to cope with another child so we put you to sleep and gave a csection… she has been raised by others for 3 years”. My heart pounded, I felt weak, I almost fell to the ground. The dream then cut to me lay on the grass with the little girl. “Mummy. Why do stars come out at night?” she asked. I pondered with her, trying to think of a child friendly way to explain the world and how it rotates. I smiled to myself at the inquisitive nature of children and felt thankful that I could help her learn about the world.
And then I woke up. Covered in sweat, roasting hot, heart pounding. Another dream about the lost children. I feel tearful thinking about it now. It ignites the hospital flashbacks of the csection, being wheeled a long rapidly in a hospital bed watching the ceiling tiles fly by. It was only half 4, I take myself to the bathroom to calm down and realise Amy’s feeding pump is alarming. I go to fix it and she is lay there wide awake and smiling at me. Life is good. She is alive and well, I can go back to bed for a few hours.
(pictured is my amazing daughter. Who I am lucky to have)
Good afternoon everyone (or morning, evening, you know… whatever applies)
I’ve not disappeared. It has been a very busy few months; Characterised mainly by issues with medications and Amy. Honestly, it’s a daily ordeal pretty much. Her cerebral palsy manifests itself in so many ways such as feeding issues, muscle tone issues, involuntary movements, aggression, frustration, neurological irritability and all kinds. She has reflux meds, motility meds, muscle relaxants and so on.
Recently her athetoid movements (involuntary movements) have been particularly bad and we had been trialling a new medication. We were incrementally increasing the dose each week until we met the right amount for her. The side effect was insomnia which then meant another med being introduced to help her sleep. Doses were tweaked, side effects monitored. We started to see a more calm Amy for most of the day but then increasingly a more distressed Amy in the evening. If you’re not careful you’ll get black eyes, nose bleeds, and a fat lip. You’d never believe the damage a 4 year old could do!
So with this and various other issues I was just about plodding a long. School holidays are nice but they are very hard work. The physical input required goes up dramatically, and all day to day tasks become a lot harder to get done as madam is very demanding and doesn’t like not being tended to.
Then it happened. A seizure. A big seizure. Oh it was awful.
We had a lovely day planned with our friends at a soft play centre. We were mainly ready for the day and Amy was in her bed watching videos whilst I got her feed ready (she’s tube fed via a pump). I walked into her room to find her fully unresponsive. She was foaming at the mouth, her whole body trembling uncontrollably, her eyes flickering and her mouth twitching. I have never been more terrified in my life.
Amy had seizures when she was born but was gradually weaned off seizure meds. We made it to age 4 without them reappearing and I had naively hoped that we had avoided this part of the cp world. My instict was to record her so we had something to show the doctors. I rang an ambulance and felt greatly relieved as the seizure tapered off and we waited for the paramedics.
Part way through the ambulance journey she came very much back to life (she had been “postictal” ie post seizure weariness/disorientation). Her legs kicked wildly and she got more and more upset. The pediatricians confirmed that yes it was definitely a prolonged seizure.
We are now waiting for an epilepsy nurse to arrange to see us and to prescribe rescue meds and her EEG is booked for next week. She’s had EEGs before and they’ve always come back as fine. Her brain activity always looks atypical, but never showed signs of seizures. I half expect that the EEG will reveal no seizures and this is perhaps an isolated incident… or that she will have no unwanted electrical activity during the test.
So here I am today. She was in respite overnight last night and today I made sure that instead of getting myself in an anxious flap like I do literally all day everyday… that I would sit and do something different. So I sat and painted rocks. It looks really childish, but I really enjoyed myself. I can’t wait to hide them in a local park for people to find. In our town there is a facebook group for rock painters. When you find a rock you photograph it and post it to the page, and you re-hide the rock. Some children get really excited when they find one, especially if it’s one they really like. I’m thinking my nintendo one will be a hit (even though I forgot to do Gumba’s teeth. Oops). I’m waiting for the varnish to dry and we’re good to go!
I’ve been working hard on eating better lately. I weighed myself for the first time in months recently and got the shock of my life! So far I have lost 6 pounds. I need to start doing weights again and maybe even join a gym if money permits. Amy is getting a lot heavier and even though we do have a hoist in her room, pushing her wheelchair up slopes is becoming very sore on my back! So I’m trying to do it all positively… I once lost 3 stone and got to a super healthy state and you couldn’t pay me to eat cake (unless it was sunday. I was allowed two treats on a sunday) whereas now, I am about 5 stone heavier and feeling very uncomfortable in my own skin. I’m trying not to beat myself up over it, or expect dramatic results quickly.. I just want to make a few better choices, move more, and get more veg in. Amy deserves a mum who can keep up with her energy levels and though she can’t walk she still loves a lot of physical play and I want to be able to take her swimming without my back feeling broken.
In other news my dad recently lost his job. I’ve been worrying about him loads but he’s found some short term work for until he gets sorted. He’s such a trooper. He’s doing 12 hour shifts at the moment and working so hard. My mum had a hospital procedure yesterday and luckily I was free to pick her up from it and make sure she was okay. She’s so brave and puts up with a lot health wise. My mum and dad continue to be a huge source of inspiraion to me. As does Phil my other half who works tirelessly and without complaint to make sure we can all live comfortably. Amy starts school in september so I’ve got some voluntary work lined up. But will also be looking into the idea of working part time in a school… just to get some money in and also to keep me busy and give me some self worth. Being a carer is the hardest job I’ve ever done.. there is no sick days, no holidays, it can be 24 hour and it can be hard to make any plans.. but I do miss a “proper” job, or a more normal life. I used to complain at my old job but really I did have it good and I was very lucky. I just want to make sure that I can help people, give my family a good life, and be the best version of myself that I can be. I still have an incredible amount of anxiety, self esteem issues, insomnia, over thinking and so on, but I am working on it every day in some way.
So that’s it really. Just me checking in with you all. I hope to be more regular with my posts soon. We have so much going on and every week seems to throw something new at us!