Helping us build memories for Loki

Loki is just over 10 months old with an extremely rare condition called Segmental Spinal Dysgenesis. Effectively his spine has a large step which his spinal cord is stretched over. The step has caused other varying medical conditions including bilateral talipes (commonly known as club foot), a horseshoe kidney, a neurogenic bladder that requires intermittent catheterisation three times a day and an abnormal rib cage which has hindered the growth of his lungs generating varying respiratory complications. We have been told that Loki will never be able to walk due to this rare spinal condition.  

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Loki certainly lives up to his Nordic name after the God of Mischief, having spent over half his life in hospital being admitted for various conditions. At 2 months old, Loki suddenly stopped breathing and we performed CPR to bring him back. We were then air lifted to hospital.

On top of the existing emotional rollercoaster, Loki was admitted to hospital again in June and he was ventilated and put on life support. We were told that Loki’s survival rate after the ventilator was turned off, would be lower than a normal child his age. We had two options: Upon extubating, he struggles we put the tube back in and switch life support back on but risk a lower survival rate. Or we extubate and don’t replace the tube. If we chose the second option, we had to agree to no chest compressions and it involved letting go with as little pain as possible with drugs.

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This was one of the hardest decisions as new parents we had to make, and we opted with the second choice of not retubing. Loki was a fighter and fought through the first critical four hours.

We remained in hospital for 9 weeks after extubating, making this one of the longest admissions to date. During this admission we went home trained in how to operate a feed pump to deliver Loki’s continuous feed program, how to use a nasal jejunal feeding tube, and how to operate Optiflow at home which is an extremely rare case. Optiflow is usually only available in hospital under supervision which delivers humidified oxygen. This was issued to help Loki grow and keep his airways open.  

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We managed to stay at home for three months until he was admitted again on the 19th December 2019. Loki tested positive for RSV with suspected pneumonia. He deteriorated quickly whilst in the High Dependency Unit (HDU) and we had no choice to put him on life support for the second time on the 23rd December. Knowing with each time he is ventilated, the chances of survival reduces, it was a tough five days.

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Loki did not bounce back after extubating this time round. We had a meeting about Loki’s future and its news we didn’t want to hear. His lungs had deteriorated and confirmed that he would be transferred back into intensive care shortly to trial a new ventilator. This is a ventilator which doesn’t require him to be in a coma, and can be used at home during the night if successful. The hope is that this will help open his airways for a time to extend a good quality of life for as long as possible.

Given there is no cure for Loki’s condition, we have made one of the most difficult decisions as parents, to no longer put him in a coma and ventilated as recommended by the consultants. We have no idea on timescales, so we have been advised to enjoy what we can and have plenty of cuddles.

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This has been the most difficult time in our family’s life, and never believed it could get worse.

It was at this very point the house we’ve been building for the past 2 years was broken into. The house is designed with a sophisticated ventilation system which hopefully will help Loki with his breathing challenges. Our home is not finished but is livable and we were at the stage of clear up, in preparation to move in once Loki was well enough.

The offenders broke in and tossed Loki's medical equipment around which we had moved in early in preparation. They also opened his Christmas presents which he’d not yet gotten to open due to being in hospital. We’re still trying to ascertain if any have been stolen as many had come from family and friends.

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The past year has been tough, but together we’ve managed to hold it together. This single act has destroyed us. The people responsible were well aware of the fight our family is in given all the medical equipment they went through.

The thieves managed to get away with in excess of £5000 worth of tools and equipment, some of which were still required to finish the house. All at a time our family is in financial hardship having such a severely disabled child.

Having gone over our budget and realising we can’t replace our tools to finish the house in time for Loki’s discharge. We have turned to the help and support here. Anything small will help to replace some of the more urgent tools we need to finish the house and give Loki the best delayed Christmas. Whilst we are unsure how long we have left with him, anything on top of this will go towards making lasting memories as well as helping the charities that have helped us so greatly over the past year.

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Thank you

The Breams

Donations

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  • nick burton 
    • £10 
    • 5 mos
  • Emily + Neil Harris 
    • £30 
    • 9 mos
  • Karina Chopping 
    • £10 
    • 9 mos
  • Mel Oxer 
    • £20 
    • 9 mos
  • David Matthewman 
    • £50 
    • 9 mos
See all

Organizer

Caye Bream 
Organizer
Barway, East of England, United Kingdom
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