Wakey wakey Charlotte

Wakey wakey Charlotte …

The feeling of absolute helplessness and desperation I felt when my baby girl was fighting for her life for the second time in 4 days will never, ever leave me.  I can still feel the surgeon’s hand on my arm steadying me against the news that she was having a stroke. I can still hear the tone of his voice. I can still see the look in his “too expressive for a surgeon” eyes. I can still feel the pain in my throat as it constricted while I shouted at whoever would answer the phone to “get Megan!” I can still feel the change in atmosphere in the room as it filled with intensive care nurses come to get her. I can still feel the panic when I was told they were taking her in a lift but I couldn’t fit and being promised that if I ran down the stairs I’d be there as the door opened, “It’s ok Leila, I’ve got her” from my most trusted surgeon. I can still feel my Mum’s partner gently getting me down the stairs to the lift when my legs gave way.  I can still see the look on the anaesthetists face as he explained they were going to put her back to sleep and to say “goodnight”. And worst of all, I can still hear my happy, healthy little girl making the most guttural, primal, agonising noises as she cried out in pain. I don’t honestly think I have ever felt anger and frustration like it before. As the team wheeled Charlotte out to theatre with a form signed by me giving them permission to remove part of her skull if necessary and a full crash cart and team following her, I punched the wall and wanted nothing more than to smash every single piece of the hospital into tiny pieces.

The next 4 hours were spent with me and Megan surrounded by charlotte’s aunts, uncles, cousins and grandparents trying to get their heads around what was happening. I just wanted to break the world, willing her with absolutely everything that I could muster to survive. What was happening? Why was it taking so long? Had they had to take her skull apart? Was it the right decision to give them permission? Why can’t I fix her? Hang on, is it GOOD that it’s taking so long? Does this mean she’s fighting? COME ON CHARLOTTE!

Eventually I got the call to say she was back on Intensive Care. SHE DID IT! SHE’S ALIVE! We ran to the ward and there was my baby. They had managed to widen her blood vessels and stop the strokes WITHOUT the need to remove any of her skull, and were keeping her in a coma to let her brain rest. The next 6 hours would be crucial.

Charlotte was then wired up to a monitor linked to the EVD in her head which monitored the pressure in her head. If this went above a certain number, panic. So for the next 2 days, we sat and stared at the monitor feeling numb.

Eventually Charlotte was brought out of her coma and taken off the machines which had been breathing for her as she was now breathing for herself. But I was confused. Why wasn’t she moving? Why was she staring? Why did she keep dribbling?

The nurses gently explained that this wasn’t normal and got me to help them put artificial tears in her eyes so they wouldn’t dry out because she couldn’t blink, move her every few minutes so she didn’t get sore because she couldn’t move, mop up her mouth when she dribbled because she couldn’t swallow and fit her for special boots to wear to help keep all the tendons in her feet in the right place as she wasn’t using them at all. Then the doctor came to explain that Charlotte had sustained massive brain damage during the strokes and this was more than likely how I was going to take her home. That she was essentially locked in her own head. Had I filled it with enough memories for her? Did she hear them tell me that? Was she scared? Did it hurt?

As has been widely reported in the media, a miracle happened. The radio was playing and Adele’s ‘Rolling in the Deep’ was playing which I sang to Charlotte. Whilst I was singing, she smiled!! Just with her mouth, her eyes didn’t flicker but there was that big smile I loved. I sang it again for the nurses and she smiled again! It wasn’t a fluke! But then, she stopped. And that was that. I remember putting myself in her eyeline as I did often, and said “You’re still in there aren’t you? You know me Scooby (my nickname for Charlotte), I don’t do anything I’m told so I’m going to be in your face driving you insane until you get up and TELL me to go away” I said all this whilst tickling her and being silly like we always had done.

The nurses had me write a daily plan for Charlotte to include things like being washed and changed first thing, story time .. hmm, story time .. that was something we always did .. I wonder .. So I downloaded one of Charlotte’s favourite stories to my phone and whilst I was snuggled up in bed next to her I read The Gruffalo in the most animated, silly voices I could muster.” “ASTOUNDING!” said the Gruffalo…” I read, and she giggled!!!! A little, hoarse giggle that was the most magical sound I’d ever heard. All of the nurses were stunned and there wasn’t a dry eye in the house. So this is what it was going to take was it? Me being the class clown. I think I can manage that…

I went out and bought everything I could think of to stimulate her. 35 story books, neon PJs & playsuits for her to wear, neon hair things, bags etc to hopefully give her eyes something to look at. I even found some butterflies with LEDs in the wings that flashed in different sequences to put in her eyeline  and  try and stimulate her eyes to work. Then the work started. For hours and hours and hours, I would read in silly voices and make, put the lights in front of her eyes, tell her silly stories and basically have the most nonsensical chats with her to make her laugh. She still wasn’t moving or blinking or swallowing but she was in there and I was determined to drag her back out again.

Mornings were the hardest. Because she was on Intensive Care, I wasn’t allowed to sleep on the ward with Charlotte so the nurses gave me a room down the corridor which I would go to as late as possible and make sure I was back on the ward in the early hours to catch the night shift before they went to ask how she’d been over night. Each morning as I walked for what seemed like miles back to the ward, I would hope that there had been some change in the night and she would look at me, or would speak to me, or would give me a cuddle. But every morning it was the same, there she was just staring. So I’d take a deep breath, swallow down the tears and set about being the loony of the ward getting a magical smile every couple of hours. I spread the word and Charlotte’s family would bring more books, colourful blankets, her favourite teddies, cushions etc to try and give her something! Smells, textures, a memory, anything. Then one day, I said something stupid to her .. and she flung her knee through the bars of the bed and kneed me on the bum! Charlotte found this absolutely hilarious and couldn’t stop giggling. It was amazing! She had responded to something I said and reacted to it!

And that was it, she was off! Hour by hour she got stronger and stronger and moved more and more. She was aware enough to express discomfort at her catheter so it was removed and  she was put into nappies as she was now completely incontinent. I was taught special exercises to do with her legs to stop the muscles getting sore and keep her legs working. She was still wearing the special boots but they just weren’t quite Charlotte enough so cue Grandma sat dutifully by her bed sewing on pink sparkly ribbons and butterflies. These were then re-named the lelli kelli bed wellies!

Charlotte was transferred back onto a ‘normal’ ward where she continued to get better by the hour. I would often catch nurses just watching her, all amazed by what she was doing. She was moving a little bit, responding to commands and questions and starting to look at lights and colours. She was still giggling at everything and finding it hilarious to kick me on the bum!

She would roll from one side to the other and shout out as she used her muscles and found her voice again. She really didn’t like the nappy situation so I went out in search of pull ups, the training nappies that go on like normal knickers. Luckily the local supermarket had them in large sizes so we stocked up and she felt much happier straight away.

A lot of work was being done with Charlotte with Occupational Therapy, Physio, Speech & Language therapy and during one of their visits we tried to sit Charlotte up with the help of everybody supporting her weight and legs. I had to then apologise to everyone as Charlotte kicked and kicked and KICKED because she was being held up. Eventually I persuaded them to just let her go and of course, she couldn’t sit up but leant herself and tried to sort her feet out. There’s my girl, I thought. She still wants to try and do it herself, just like she did when she was a baby.

In one of her sessions we took her, in her wheelchair to the sensory room. As we were arranging the wheelchair outside and getting Charlotte unstrapped, she did something outstanding. She stood up and very, VERY shakily walked into the sensory room! She still couldn’t focus on much so still had a bit of a fixed expression on her face but that smile told me she had never been prouder of herself and rightly so! She spent the whole session then just staggering around and laughing. The planned session went out of the window as we all just allowed her to have her moment and take her first steps. Again.

From then on, every time we went anywhere in her wheelchair, she would have her bed lowered, swing herself out and take the two or three steps to her wheelchair. This was amazing but me being the evil mummy that I am, started moving her chair away so it became 5 steps away, then 7, then right to the end of the bed and she was lapping it up! You could see her getting stronger by the hour and it was a privilege to watch.

Every morning l took the same dawn journey to the ward via the coffee shop for my morning hot chocolate to be by Charlotte’s side as she woke up. One particular morning I quietly popped my head around the curtains and she was sat up. I felt heartbroken that I hadn’t been there when she’d woken up however within a split second she made all that go away by looking in my direction and saying in the softest, most beautiful voice “Morning Mummy”. I could have burst with pride right there! It was the first time I had heard her call me Mummy in such a long time and her face told me she had been trying to say it for as long.

We were quarantined on the ward for a few days one week as one of the children had picked up a bug and during this time, she really found her legs. Off she went seeing if she could run. Up and down the ward she went with the wobbliest run ever, giggling away and getting less wobbly each time. I kept this news a secret as I knew her sister was coming to visit her so as I brought Megan onto the ward I called “Charlotte, your sister’s here” and watched Megan’s face as the little girl she’d last seen in her bed only able to shakily take a few steps to her wheelchair ran towards her with a big beaming smile on her face. Megan just looked on in shock and gave her the biggest hug ever! It was magical to watch and I knew then that I had my family back in one piece.