Brain Bleed

Well it’s officially 2022 and I’ve beeen writing this for nearly 6 months. I haven’t found the head space to finish it.

I’ve nothing remotely positive to say about 2021 – sorry! The last year was a complete pancake.

At the end of the year, 30th November to be specific the most scariest day of my life happened. From the picture above you can see Ava was on full life support.

You will know from my blogs, and where ever else I scribble, Ava is a complex little soul, but something happened that was completely unrelated to her conditions and threw our world out of whack completely.

On that particular evening, I was going about my usual tasks, it came to bed time and as usual before I sort myself I go into Ava’s room to put her nightfeed up, and give her the nightly meds she takes. She has a medical bed, it’s great, it’s electric and it keeps her safe and unable to escape and do some damage. The doors open out in 4 sections, I usually only open 2 in the middle, but for some reason (I still can’t fathom) I undid another door up by her head. She was asleep, completely out cold, because she is deaf , let’s face it, nothing would really disturb her.

I had already put her feed in the bag and I stepped sideways to prime her feed line and feed it through to connect to her. This must literally have been 3/4 seconds, as my back turned I heard this noise, a noise I still cannot shake out of my head. I knew Ava had fallen. It that split second when I turned round to see her on the floor I instinctively knew this wasn’t okay.

I scooped her up and she was stunned, no blacking out just eyes bulging staring at me. I laid her in her bed and felt the back of her head, she had a huge lump, but it was a weird shape, not just your typical “egg” shape. I was cuddling her and then she started to cry, but it was an inconsolable cry as she was grabbing her head. I called her dad and then grabbed some frozen sweetcorn, – no peas here!

Me and Steven began to argue about what to do, he was googling concussion and symptoms and she ticked those boxes .. but my gut was telling me different. At this point she had vomited and she then did this for a second time, I could see her fading away but her dad said she was just going to sleep. I grabbed her leg and her arm and let them go as they flopped, dead weight down onto the bed. Ava wouldn’t do that, she’d have some sort of a reaction. By this point my head was in overdrive. I turned to Steven and said it’s a brain bleed .. he said I was being dramatic and googled – (why do we do this!) and he said no, she hasn’t got the signs.

I just want to point out this was over about 20minutes.

I knew this wasn’t okay, and I called 999. Because of Covid you go through to a person who asks you if you can WAIT in a que??! I was frantic! No?? I can’t!! The poor girl then knew the severity and put me through to a call handler. I briefly explained what had happened, how she was presenting and she told me to instruct someone to get a defibrillator. I knew there were two in the village, if Steven sprint he would be less than 10minutes. As it were, thankfully the ambulance was no more than 5 minutes in arriving at the house. A defibrillator is just not something you want to hear or think about using on your 7 year old child.

Between them arriving and me talking to the operator, I was told to inform her of every breath Ava took. It really sank in at this point, Ava was unresponsive, making a really odd moaning noise every so often and the pauses between each breath was long, too long. She was now not breathing properly.

When the paramedics arrived, it just exploded in panic. Medical history reeled off as best we could, what had happened and how she was presented whether it was normal or not. Her blood sugars were taken at they were 15.6!? I was like no, no way. How!? Now, after the ordeal it makes sense.

Her pupils we fixed and her left dilated .. the side she had the massive lump on. We bundled her into the ambulance and blue lighted to hospital, we were going so fast I could barely stay on my seat. I watched the numbers and it was a moments like this I hated being mum to a medically complex child, I could read them, I could see her heart rate getting slower and slower and slower. Every time it went down I’d squeeze her hand for a response, a reaction, anything, and every time her heart rate jumped up slightly. I was desperately trying to keep her here.

When we arrived at the hospital it became a blur, I was pushed further and further to the back of the room, more and more doctors came in and people asking me questions, to the point I couldn’t answer, I was watching her, I was too shocked to speak and I just said I’m sorry. I can’t right now. I watched them poke her, talk amongst themselves and I was invisible “I don’t like those numbers” I kept saying it.

A doctor explained their concerns and I understood because it was exactly my thinking. She was rushed to CT so quickly I was actually shocked at how quick .. (I’m a massive fan of 24 hours in a&e and all that lark!)

It felt like a lifetime as I waited in the relatives room, I felt sick I just had no idea how it had come to this, and it was MY fault, a mistake, a lapse in judgment. It never even occurred to me I could be accused of abuse.

Before I physically saw Ava, I heard a doctor shouting down the corridor “phone addenbrooks and get a major paediatric trauma transfer now”

Fuck. I knew it. And now it was getting serious, I knew something like this was serious, but the enormity of the situation was so much more than you could imagine. The same doctor came into the room and he was so very calm, collected and I thank him for that, I know it is his job but to not have him flapping of panicking at me helped so much. He calmly explained she has a massive bleed on her brain and she needed to go to addenbrooks now, in those 15 or so minutes whilst she was in CT I can only imagine the eruption of panic because he told me that the surgical team had the scans in their hands and were waiting on theatre their end for her. He also explained that they were going to put her to sleep and take over her breathing, she was deteriorating and her brain couldn’t cope with the pressure building in her head.

Ava had a subdural haemotoma, undisplaced skull fracture and mid line shift of the brain.

I felt the air be sucked from my lungs. I had no words.

I was on my own at this point and Steven had just then managed to get to the hospital with me. A nurse from the childrens ward who has known us all since Ava was a few months old came in and I could see the upset on her face. I was broken. I broke down and I just couldn’t get my head around what and how it had happened. She told me not to blame myself, asked if I wanted a tea (lol) and then she dived in and helped with Ava. She took over the lead from some of the top doctors because she knows Ava’s little body the most; she knows where to go and what to do. She was my angel that night.

By the time we got to see her again she was wired up, there were so many machines and her eyes taped shut. She was bound so tightly to a spinal board and blocks around her head machines doing all the work for her . It makes my whole stomach flip thinking about it now, it’s an image that never leaves your mind. There was a lovely anaesthetists he was so chatty and jolly, he explained he’d put her to sleep and would travel with her in the ambulance, they asked if I wanted to go, I declined. I knew how stressful it could be, I knew the ambulance would be on high alert and I would be no use to anyone. Steven and I decided we would go in our car.

As Ava was prepped to leave, a mountain of machines and wires. She was wheeled out the same way she came in. Those same nurses that clocked us in and didn’t really think it was much of an emergency looked on with horror on their faces. Other patients too looked horrified. Then out of a&e paramedics in their ambulances with pitty and sadness. I had to look away I felt like I wanted the ground to swallow me up.

We arrived over and hour before her ambulance did, we later found out the reason why that was, was because they had to turn around twice due to the ventilator playing up. Not what you want to hear and thank god I wasn’t in the ambulance with them I would have absolutely freaked out. Steven was falling asleep in the relatives room (that tends to be his go too in high stress environments). I was so exhausted but couldn’t sleep, I sat cuddling her teddy wishing the hours away so I could see someone, anyone… when she arrived a surgeon flew through the door and had a consent form, her words were “ this is a life saving procedure, we need to do this now otherwise she will die.”

A nurse greeted us, a face I knew in a whole new world and place and she gave me the biggest hug in the world, she had worked with Ava for such a long time at GOSH when she was little, and you just can’t forget Ava, and also, because I post so publicly about her journey many people from her past still stick around for the ride. It was like she’d still been in contact this whole time and she brought some calmness and told us what to expect.

The surgeon told me the brain bleed was so large she was unsure if she would survive and told me she’d “ try her best to save her”. I held back my tears with this lump in my throat unable to breathe and I signed my daughters life away like I’ve done so many times before but this.. this was different.

I barely made a sound as I said thankyou; Steven decided to ask why she took so long and I snapped “does it matter!! Let her go to theatre” he looked a bit sheepish after that but I couldn’t help myself.

4 hours went and passed us. Until 3 people walked in and said that the surgery went well and now it’s up to Ava, how well she heals how much of her brain is damaged and what will happen. We were asked how this had happened, again, and I thought nothing Of it. He told us to wait till the nurse called us in because they were cleaning her up and changing some tapes over. They advised she was actually breathing for the most part by herself, she was ventilated but there’s ways in which they can still make the effort to breathe.

It was an awful sight to see how the way she was, and I thought she would be worse! She was intubated and had a wire coming from the front of her head, I was told this was an ICP and it was flickering numbers measuring pressure in her head, if it goes past a certain level it would mean the pressure is rising again and she would need surgery again. She had a craniotomy, but unlike what I’ve seen before they had already bolted her skull back together.

I went over to her, the intensive care nurses reassuring me and letting me know that if I had questions; to Ask.

I became fixated by the numbers, I knew what the all meant except a couple and they were explained to me – like the parameters for the ICP probe what numbers should she be. So there I was so aware of every beep every noise .. the noise off of those bloody ventilators, when they pressures get to high because she’s breathing over it, or they get a Air stuck. Arggggh it haunts me.

I just went over the her, she couldn’t move, she was edged in tightly till she had another scan to check her neck and spine were not damaged from the fall. But I could still stroke and kiss her tiny little face so soft, but so cold. If you’ve ever seen a loved one in intensive care you’d know .. the coldness of that ward, temperature wise is low. She was wrapped up warm and the machines doing their thing.

Steven was with me up until this point but we had nothing I’d scrambled out of the door with her medication, my medication a drink and a bit of food. We knew this wasn’t going to be quick and we had the other 4 children being looked after by my sister. Steven needed to go home get a plan together and bring back stuff that both myself and Ava needed. So he did that after showing me where I was staying and we parted and I went to head back. My phone died. The walk back to the hospital is not easy, nor quick, it is a town! And I got so lost! I walked in circles I walked round the back of places, until I eventually found my way back.

Ava was doing ok.

When I got back to her bed 3 people were standing by her bed the nurse says “Kim these are the police, they’re near to have a chat with you about what happened ..” my heart sank. I couldn’t believe this was happening. I wanted to be with my daughter.

We went into a side room, there were two police officers and a social worker who’d made the emergency visit up to the hospital from my area. They were pleasant enough, but you know they’re there to prove or disprove what you are saying and whilst your child lays in intensive care I can tell you it’s an awful, awful feeling.

I went through the whole evening, what happened, how it happened, and it was simple, just a pure accident. They questioned me and went back over the questions – to catch me out, I felt like I was watching 24 hours in police custody. I repeated the same thing over and over, there was nothing else to say! Nothing to slip up on, what I was saying was the truth! I had to draw diagrams, they wrote down pages and pages of notes. Till we got onto the bits I knew they were going to ask me,… my mental health.

I won’t go into the ins and outs but they were trying to blame Ava’s accident on me. The paramedics pit the referral in saying I was “intoxicated” because of how I was acting … however someone that leads out lives with an Ava know that being asked questions over and over and over. The paramedic asked me if I had a book on her and I laughed and said do you think I have time??? That, that right there is what got me into trouble and an assumption made. Not that I could reel off every detail every quirk, every medication off the top of my tongue, what a massive knife to my heart. Just the sheer fact I was “too calm” so clearly I MUST HAVE BEEN INTOXICATED.

The two police officers seemed confident that the case would be dropped and it was just an accident – it was. 100%. I would never, ever hurt any of my children, or anyone for that matter! They were just as stunned at the allegation mainly down the my reaction, because my jaw genuinely hit the floor!

This drained me, sucked me out of me then I couldn’t believed I had in me. I pulled myself together and wanted some quite time with Ava and so I did, I sat with her, holding her hand, stroking her face and just hoping she would wake.

The doctors came to talk to me and said she is stable so what they wanted to do was wean down the medication and eventually remove the breathing tube – this is the only way they can tell how Ava is, can she breathe alone? Can her body work alone and her brain be sending the right signals, can she move? Is she paralysed, and have we “lost Ava”.

They weaned the mediation down and, nothing. However she was breathing for herself more. They left it and another doctor said look let’s just do it, turn everything off and leave the tube in, so he did, everything switched off and my heart was in my mouth. She was fine, she was breathing and her sats all within the normal parameter.

They wanted to take the tube out, and due to my own selfish trauma, I couldn’t be there when they did that. So I left and they extubated her, when I came back she was laying cosy under the blanket and a previous CT scan before this showed her back and neck were fine.

She wasn’t doing much, so again the ruthless doctor came over and ripped the eye tape off the eyes and she flinched! I’d never been so happy to see this. She then started to move and eventually opened her eyes and put her hands over her face (she always does this!) and stared at me. I knew she was back. I sat with her into the early hours and felt happy to leave her whilst I got some sleep, and I did.

The next day; I went down and Ava was having some physio and smashing it, it seemed like she was exactly as before just tired, extremely tired, she wanted to sleep and sleep in between any cares. To my surprise they wanted her back on a ward and not in ITU. This unnerved me a bit, but I knew it was a step in the right direction so we went! The really sad thing is that Covid has really messed up hospitals and their rules. I had to stay with her for 7 days and Steven unable to see her, then we could swap but we could never swap half way through. This really got me worked up and stressed when I was already so stressed about so much!!

The ward we were transferred to was a dive .. no other words for it! We are spoilt with GOSH and my anxiety was getting out of control. The next day the surgeons said they were happy for her to continue recovery at our local, so after two painful nights on the ward we were transferred back to Broomfield.

Should have been a relief. No. Far from fit.

I for the 100th time had to repeat what had happened .. it’s irrelevant now she’s healed amazingly and we are coming out of this rubbish place.

Don’t get me wrong I am ETERNALLY grateful to the team who literally saved Ava’s life during that craniotomy. On arriving to Broomfield in the ambulance we settled down and it was like being in a psychiatric ward again, because Ava is so dangerous and a nightmare at night, at home she has an “Ava proof” bed and cannot climb out. This was a normal bed with padding round 😮‍💨 this would mean me watching her 24/7 and no sleep, so they put a nurse at the door every night whilst I slept and I hated it.

Things began to get heated, she was deemed medically fit to go home but wasn’t allowed because they needed a strategy meeting with everyone involved with Ava and my family (professional wise) to make sure I hadn’t done this to Ava – remember Steven was never ONCE questioned.

I exchanged a fair few text messages with the social worker and finally 3 days after arriving at our local everyone agreed it was NOT my fault – it never was! It was a ridiculously unfortunate accident that turned out to be extremely serious. I’m so grateful that people who know us and Ava praised me especially as a mum for all I do and have done for 7 years.

When we got back home we had had crash mats delivered to go all around her bed so the same thing could not happen again, and believe me, it won’t! But this wasn’t the end of it. The case was still not closed.

It became a whole investigation surrounding me and the children, schools were contacted everything! It was utterly degrading, it tore me to pieces – 6 months on I can honestly say I am NOT okay about the whole ordeal.

As things unravelled social services had nothing, no leg, no substance because there is NOTHING. Some weeks later I received the official report, nothing and I mean nothing could prepare you for what I read, as a mum, a parent of 5 children. It made me physically sick, even though the police had dropped the investigation, there where hypothesise that “I could have” “ I might have” caused her injury… I also read the report from the paramedics, out right calling me an abuser. I was drunk, it was time critical and I took too long to calm an ambulance …?

I wrote a formal complaint to the east of England ambulance service who surprisingly sent me a lengthy apology about the situation, about how the paramedics worded things incorrectly, how they should have assessed the situation better, giving the complexity of Ava’s needs only I know her and tk be asked over and over again by hundreds of health professionals becomes difficult and I often DO forget to mention things or say things so robotic it must seem very odd. But it is life! This is Not and will NOT be our first and last rodeo with Ava!

X marks to spot where she landed. I opened the first door and turned to sort her feed as you can see. She then fell.

Life has got easier, social services fromThe safeguarding team have gone. But that will never erase what happened, it will never get rid of the fear that if something happened to any of my children – accidental, they would assume again I did it.

I live with the fear and guilt everyday. Recently Ava had her final check up in Cambridge, she has made a full recovery, no concerns and we think and hope there’s no life long damage to her brain.

The trauma is real.

Parents have and will harm their children but it should never have been questioned, my history, my past the 100’s of people I’ve crossed paths with for Ava have all told me it was ludicrous. Policies are policies. But it dragged on months. It didn’t need to, at all, it should never have happened.

All I am thankful for is that Ava is still here, she is still Ava and all we need to do is close this chapter.

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