Costs towards Osian's short and long term care

All of the money we raise will directly go to Osian. Osian is a baby with complex needs and an uncertain future.

We don’t know how long we will have him, so we are doing everything we can for him to have the best life possible.

I have closed my business to care for him full-time and Dave his Dad is limited to how much he can work as some of Osian's care sometimes requires two people.

We will be modifying our home, hiring tradesmen to update our home to accommodate him and his medical equipment and buying specialist furniture. We need to change our car to accommodate Osian and his life support equipment.

Osian will need medical care and equipment that the NHS does not provide.

We also want Osian to have a full life so any money over our target will go to any therapy and fun days out as well as his long term care. He has been in hospital for over a year and we want to show him what he has missed.

Osian will be on a ventilator 24/7 when he comes home and will always need someone to watch him. We have been awarded home carers for some of his care which will mean we need to provide a space where him and his carer can be comfortable.

There will be probably many more expenses (increased electricity bills for example!) however we are in new waters so are unaware what it is going to take. What we do know is that we want Osian to have the best life possible so opening it up to people that can contribute and want to contribute makes sense.

Here is what we have been through so far…

Osian was born on the 9th November 2021 at 23 weeks gestation with very small odds of survival.

We remained positive but also realistic. Osian was born with chronic lung disease and all the other complications that come with being so tiny - a birth weight of 507 grams.

Osian was born on a Tuesday so in the early weeks we used to celebrate getting to Tuesday, when we had hit a Tuesday it meant that he had made another week.

Tuesdays went by in the NICU in Southmead hospital and Osian was still on a ventilator. Osian stayed on a ventilator for the first 105 days of his life. One day he decided to remove his ventilator himself (this is like him) and managed to go on the CPAP mask.

A few weeks passed and we moved from Intensive care to High Dependency and made our way to our second hospital St Michaels Hospital in Bristol. We arrived in March 2022 In St Michaels. Osian had a hernia operation and the first procedure on his airway. It turned out that it wasn’t only the Chronic lung stopping Osian coming off the ventilator, he has a narrow airway, the medical term is a stenosis.

We left St Michaels Hospital after Osian’s procedures and the prognosis was looking good. He was on low flow oxygen and really stable. We were breastfeeding which he loved. I breast pumped for 7 months to make sure I was still producing milk - that’s 8 pumps a day and one in the night, the things you do for love!

Our next hospital was Bath, our local hospital. This was in April 2022. We were thinking about setting up the nursery and couldn’t wait for family and friends to finally meet him, covid restrictions had stopped anyone meeting Osian prior to this.

Sadly things were not meant to be, Osian declined in the month we were in Bath, needing more pressure on his mask and his oxygen requirement soared to the point that he was requiring high pressures and 100% oxygen. He was rushed to our 4th hospital Bristol Children’s Hospital Intensive Care (PICU).

This was our darkest time so far, Osian was so poorly, back on a ventilator, heavily sedated.

We were preparing for the worst, we met the palliative care team and talked about maybe saying goodbye to Osian if he couldn’t pull through.

Weeks passed and he slowly got better, we will never know what was wrong, a bug or virus but the tests didn’t show anything.

This is an edited story as to go through all of his medical history we would need weeks! He is very vulnerable so has had many viruses, colds and bugs. He has scars on his little legs and arms left by of all the cannulas. The hospital normally need someone senior to gain vein access as Osian’s veins have been accessed so much.

One of the major things that has happened to Osian is his tracheostomy. This was decided after his last failed attempt to get off the ventilator.

Having a tracheostomy is no walk in the park, we need to look after it and of course there is more chance of infection. It gives Osian what he needs for now and myself and his Dad have been trained and signed off by the wonderful NHS nurses to change and look after it.

So where are we now…

Osian is on the Caterpillar ward HDU at Bristol’s Children’s Hospital. He is still on a ventilator through his Tracheostomy. He now breathes himself with the ventilator providing pressure to make the breathing easier as well as a backup in case his breathing is not at the minimum levels.

We have been given a discharge date of 10th January 2023 which will mean it has been 14 months since he was born in hospital. He spends most of his time smiling at the nurses and breaking hearts with his beautiful smile and spirit.

What’s the future for Osian? Well that’s unwritten and uncertain. He will need 24 hour care while he is on the ventilator and tracheostomy. Gradually we will hopefully be able to wean him off the ventilator until he will be able to breathe through his Tracheostomy without the additional support. When he isn’t requiring any oxygen or ventilation (probably around 3 years old) he can have major surgery on his airway.

If the operation is a success, he will be able to have his tracheostomy removed. There is hope and we must also be aware that anything can happen so every day is special.

Osian is a fighter; he is the bravest person I’ve ever met. His will and fight for life is tremendous, he is my biggest inspiration and my best teacher.

Osian has 2 sisters and 1 brother who cant wait for him to come home.

Thanks for your donation it is going to make such a difference to someone that really wants to be here.