Elisa’s Dystonia Journey: The Hip Surgery

If you’ve read my previous post about Elisa’s current predicaments leading to hospitalisations, you don’t have to click this link. If you haven’t read it and don’t know what has been happening previously, I recommend you to read this first before carrying on.

Post telling about Elisa’s dystonia and hernia surgery

Spring spent in hospitals

Elisa spent the majority of April in the hospitals. She did get transferred from Southampton to our nearest hospital, Poole hospital, which made it easier for us to care for her and I was able to be more involved. During that hospital stay, Elisa’s dystonia did not get better and her dystonia rescue plan had to be constantly reviewed and altered. In the end, the doctors were trying their hardest to get the hip surgery booked in for as soon as possible.

Her hip surgery was booked in for June

Personally, I felt disheartened. It was so torturous for me to see my child in so much pain. She was in agony! All she would do was either be in drugged up sleep in relative calmness or scream like she was being tormented in medieval torture machine that stretched her limbs into unnatural positions. I am not going to lie – it was hell. I was convinced Elisa was scared of waking up, to be aware of her pain. The complaining and screaming came on like with a flick of a switch – one minute she would be seemingly calm and sleeping, the next second she would have screwed up her face and was screaming with the the full capacity of her lungs.

The reason for a long waiting time was the pandemic

I was told there were only two hospitals doing paediatric hip surgeries: Southampton General Hospital and Great Ormond Street in London. As was the case, the waiting list was unduly long for both hospitals. It was unsettling to think there could be so many other children in similar agony to Elisa waiting for the operation as desperately as we were…

This is the position Elisa was the happiest in – if we straightened her legs, she would immediately stiffen up and complain loudly. She even slept like that! Sometimes we managed to keep her comfy as so on a bed, but mostly one of us would be laying next to her and holding her in this position to help her.

Still, every single day I wished for a phone call from either of the hospital to announce: “Hey, we’ve got a cancellation – could you come in as soon as possible to get Elisa’s hips done?”

That never happened though, but I lived in hope.

We got Elisa home

In the end of April, we got Elisa home. It wasn’t because she was better; it was a trial to see if we could manage her dystonia better at home where we would have all her equipment and specialist seating in hand, not to forget the comforting stimuli of home environment. Armed with very powerful drugs and our invaluable night carers paid by NHS, we got her home and hoped for the best.

We tried our hardest. 24/7 we would cuddle our daughter, as that was the only way we could keep her as content as possible.

It nearly broke me.

I found myself thinking that I wished for her to give up. I couldn’t imagine the strength required from her to keep going, and I wanted her to find peace – even if it would only come through death. I was horrified by my thoughts. It wasn’t that I wanted to lose her or for her to die. I wanted her pain to stop so bad that I was even ready to let her go – so she would not have to suffer so damn much anymore like she had been.

If you do follow me on Facebook, the last bit didn’t come to you as a surprise, as I did post about it there. I add the post underneath for you to read now in case you’ve missed it:

My best wasn’t enough

In the end, it was too much for me. We decided to take Elisa back to the hospital, where she could have more sedatives than what we were allowed to give her at home. It wasn’t an easy decision in any means, but it was what we felt was right for her.

She spent the last weeks of May in Poole Hospital. I informed the doctors I rather had her in medically induced coma than see her suffer, but due the infection risks and withdrawals and all that lot that comes from such extreme medications, it really wasn’t a practical option. It left her being medicated as regularly as possible with pain relief, chloral and other sedatives.

Thanks to our insistent nagging though, the doctors allowed it that she didn’t need to be screaming her head off in absolute agony before giving her the strongest stuff.

Time is too slow for those who wait

It took forever, but we got to the end of May. Then she was transferred to Southampton Hospital – on Dan’s birthday – in readiness for the upcoming surgery.

The surgery finally happened in 2nd of June

and it took nearly 8 hours. I do admit, I do not know all the ins and outs of what they’ve done to her hips as I didn’t want to know – but both of her hips were done, metal rods put in, bones crushed and what-have-you, tendons in her groin were loosened and they operated on her pelvis too. She will have four big battle scars as a proof for undergoing such an operation.

If you want to know what was done, Dan found this useful video for you to view on Youtube called “Hip Reconstruction in Cerebral Palsy“.

She will need to wear a brace for 6 weeks post-operation.

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Child wearing a hip brace after hip surgery
This is the brace. It is so much better than a cast that was the other option!

Afterwards, she spent 2 nights in Paediatric Intensive Care Unit (PICU). First night she was in ventilator getting as much rest in as possible, and for the second night she was kept in for other medical reasons.

On a third day she was transferred to HDU ward, where she is still today.

Today is the 10th of June 2021.

Today it has been a week and a day from the surgery.

Guess what? I went to the hospital to see Dan and Elisa today and Elisa gave me a genuine smile when she saw me. She smiled at me! For the first time this year! My heart nearly stopped, it was a such a sight that I could have cried on that very spot!

Instead, I rushed over to stroke her face and cuddle her as gently as I could.

She has some gentle physio daily and she has even managed to sit in her own wheelchair already – and the big news is that she is tolerating it!

After having to cuddle our child non-stop as that was the only way to keep her as content as possible, to see her in her wheelchair is… I don’t think there is a word for this sort of emotional excitement, wonder and happiness pierced with sadness that I feel when I see her now.

We even got Elisa out of the ward – she joined us for lunch in the hospital’s cafe!

Oh, only if we could have had her hips done earlier, back in March!

Maybe this was it?

We are so hopeful we have finally cracked the mystery of the dystonia trigger – it might have been the hips. Her sore hips causing her to go into dystonic status every single day for the past… I don’t want to do the maths for how long she has suffered. I’m just glad we’ve finally managed to do something that has made a positive difference to her wellbeing.

She is still having a lot of drugs, but not as much as she was pre-surgery. In most likelihood she will be spending the whole 6 weeks in the Southampton hospital so she can have the specialist physio she requires to heal, but that is such a small price to pay if it means we can have our happy little girl back!

Again, thank you for reading – and to all of you who has sent us messages, comments, phone calls, cards and gifts: thank you so much. It has meant so much for us. It has helped us to keep going, knowing we are not alone in this. We are so grateful to you. Thank you!

Mother at Home: Child at the Hospital.

So much of missing Elisa is guttural.

Usually, when I miss someone, I either call them or text them. Usually the latter. I can keep in touch with my stepdaughter and nieces that way, I can call my parents who live in Finland. I can even write and receive simple sentences from my 5-year-old or have a chat with her over the phone if a need arose.

With Elisa, none of the above communication methods are usable. She is non-verbal, and cerebral palsy makes it nearly impossible for her to master any sort of meaningful movement in any of her limbs or body. She is deaf, and when she is poorly, she hardly ever tolerates her cochlear implants as she prefers to heal in complete silence that her body naturally engulfs her in. Her eyesight is not a lot better, even though she can recognise people and animated characters by looking at them. Still, eyeing Elisa through a screen knowing that it is possible she might not even recognise me on the screen at her end does not provide the equal comfort than actually seeing her.

So much of communication with Elisa is done through touch. We cuddle her to shower her with love. I stroke her hair, I gently trace her facial features with tips of my fingers. I tickle her, or give her a firm, strong massage. I smell her hair, the curve of her upper lip, where I can feel her breath. I love breathing in the smell of her breath when she’s healthy. When there isn’t that sickly sense that she’s got a flu,.

I can’t get any of that through the screen.

When she is not at home, the house feels utterly empty. Even if everyone else was filling the space, the lack of Elisa’s presence is so immense that none of us really know what to do with ourselves. Even the cat and the dog look like they’ve lost the plot, wandering around aimlessly, looking for something. Looking for Elisa. Even if she doesn’t do much, she does so much more than any of us realise, and it only comes painstakingly clear when she is not around to do it.

What is the hospital life like during the pandemic as a parent at home, when your child is an inpatient?

I recorded this voice clip on the 2nd of March. I attempted to answer the simple question of: “What is the hospital life with your child like during the pandemic, when you are the parent at home?”

I made it into a little slide show, with subtitles.

There are many reasons why me and Dan have made these care arrangements; why he is the one looking after Elisa at the hospital while I’m at home with Melody. One of the reasons is as simple as me being the one with a driving licence, therefore doing the supply runs between home and hospital.

Today is 9th of March 2021.

Elisa is still in hospital. I got to go and have a cuddle with her this morning before she got transferred to Southampton hospital with her Dad.

During the pandemic, Elisa’s muscle tone has been getting worse. She suffers from dystonia, which is “unintentional sustained muscle contractions leading to abnormal postures.” The lack of physiotherapy and occupational therapy may have contributed towards the worsening muscle tone.

Two weeks ago Elisa got admitted to the hospital due a lot of stress from dystonia – she was in so much pain. We took her in for the third time this year.

While doing their examinations the hiatus hernia was discovered nearly by accident, and since then we have discovered her fundoplication has loosened up as well as her hips are not doing really that well either.

She will have a surgery tomorrow. They will tighten up her fundoplication and get rid of that hernia that is letting her bowels push her lungs. I can’t even imagine how painful that has been for her. I mean, I’ve seen how much in agony she’s been – but to actually know how she’s felt…

 I just hope she will recover quickly and come back to being her happy self, without pain, as soon as possible. I am also so very scared. It’s going to be a major surgery.

Today is 12th of March 2021.

The surgery lasted 8 hours, but was regarded a success. Afterwards she was on a ventilator for nearly 24 hours in Pediatric Intensive Care Unit (PICU), but has already been taken off the ventilator and moved to High Dependency Unit (HDU) . I wish we could go up there with Melody to visit, but it’s not possible nor safe. Melody has been back at school, so even if the hospital would allow siblings to visit, we would not recognise it being safe.

Finally,

It is strange being home without Elisa and Dan. I’m trying to keep Melody as busy as possible, as this time around she has found it very tough indeed. She was so used to us shielding, all of us being constantly at home together, and all of a sudden half of her family is out of reach and mostly to be communicated with through screens.

We do not know how long Elisa will be in the hospitals for this time. She won’t only need to recover from the surgery, but most of her medications need to be fiddled with again to provide the relief from dystonia and other problematic by-products of her disabilities.

Will keep you posted…

Who is Elisa?

What kind of a person is she? What does she like or hate? Who is she?

Elisa is funny & cheeky little git.

She has a wicked sense of humour. 

Watch her, as she will try to cause havoc. She will try to pull the leads attached to her knowing you will come to tell her off, which she finds hilarious! In similar fashion she will try to flick her implants off her head knowing that you will soon appear to put them back on her.

She loves rough and tumble. She loves making a mess. She loves water: she loves swimming and splashing and playing with water. She loves sensory play and bright lights. She likes exploring with her sense of touch. She finds bubbles fascinating. 

Elisa is happy 5-year-old.

She is a content little girl, who only cries when there is something terribly wrong. Crying is her last resort; if you hear it, you go running to her.

She cries if she is in pain. She cries, if you keep doing something she has tried to say “no” to numerous times and she cannot think any other way to get out.

Usually, you see Elisa smiling and laughing. That is her. A happy little soul. 

Elisa loves Futurama. 

TV has always mesmerised her. She could easily spend the whole day watching cartoons. Though she is picky! She will protest to Peppa Pig or anything too babyish. She used to love Frozen, but that does not take her fancy anymore. 

She likes the films Moana, Coco and Angry Birds. 

But she absolutely loves Futurama. Her favourite characters in it changes periodically. It used to be Dr Zoidberg, now it is Bender. 

She cannot speak, but she won’t stop talking 

Even though there is no language as such that she can use to communicate with, she expresses herself colourfully with facial expressions and body language and audible squeals. 

She will make choices by smiling at the object she prefers and following it with her eyes. If she doesn’t really mind, she will not react either way to the presented choices. 

She says yes with a smile.

She says no with a frown. Sometimes she closes her eyes and pretends to be asleep, which is another way of saying no.

Elisa does not like 

heavy metal and/or rock music. She prefers clear melodic music with simple instruments that is easy to listen to with coclear implants. She loves Frank Sinatra’s voice! 

being left alone. With her medical conditions it is vital she is not left alone anyway, but if she realises she is alone it terrifies her. She is happiest when someone is touching her, when she can sense someone’s attentiveness. 

there are a couple of episodes of Futurama she does hate with passion. She will cry if you make her watch the whole episode of  “Yo Leela Leela” (Season 6, Episode 19) – especially on the bit where the other TV shows are trialled on the orphans.  Her absolute favourites are “Why Must I be a Crustacean in love?” (Season 2, Episode 9) – especially the bit where Dr Zoidberg lifts weights in a gym – and “Clockwork Origin” (Season 6 Episode 9), especially the bit where robo-dinosaurs are fighting and Fry is almost killed. 

She hates being on her tummy. With poor head control, her face is pretty much squashed against the floor if she is put on to her tummy. She hates it. 

She picks favourites.

Mummy used to be her favourite, but for years now she’s been a devoted Daddy’s girl. She picks favourites from all the people who care for her, from school to hospice and respite services. She reacts in bigger measure to people she likes more.

She will give me a nice smile – she will grin like a maniac to her father.

Elisa loves people and attention. 

It is best if she can have as many people admiring her as possible. She’s never been shy, and unlike her mother, she loves being in the centre of the attention. She loves watching people’s reactions to her; she loves big smiles and expressive faces! 

She understands tassels – a tactile body sign language which is used to let her know what happens next. Touch is important to her, not only in comforting way, but as a way of communication too. 

She is interested in others and likes people watching. She gets entertained by watching kids running and jumping.

Traffic has always fascinated her: she is never bored at a bus stop if she is able to watch the cars go by.

She loves being out in fresh air, she adores the sunshine and wind on her face. The best place to be is being cuddled; though do not overheat her, she does not like being hot and sweaty.

Elisa is diagnosed with

  • cerebral palsy, which makes her immobile. She cannot walk or sit unaided. Her cerebral palsy is described as dystonic and dyskinetic, meaning uncontrollable and involuntary movements of her limbs; also, she gets really stiff and suffers from cramps.
  • deafness; she cannot hear a thing without her cochlear implants 
  • cerebral vision impairment: she is registered blind. She can see, but her brain muddles the visual sensory input a bit. Also, she’s short-sighted.
  • epilepsy
  • reflux and unsafe swallow; Elisa is completely tube-fed

But as you now know, she is not her diagnoses. 

Who is she? 

An outdoorsy little geek, who loves being in the spotlight of attention.  A sassy girl, who likes a violent robot Bender and adores Frank Sinatra’s deep voice. She is my precious first-born, who is perfect just as she is. 

PS. You might know her by a different name – read here why she carries a nickname here in the blog!

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