I'm Kaleigh, a family friend of a truly remarkable little boy who is currently facing the most heartbreaking battle. I have been sitting on the sidelines, feeling incredibly sad and absolutely useless so I've decided to do all I can to help support this wonderful family.
Here is Brave Bleu's story...
On Monday 21st March weighing 9lb 15oz, beautiful Bleu Denley Saunders was born. After a traumatic birth, Bleu was a little quiet but soon moved to a ward for cuddles with his adoring siblings. On a routine review the paedatrician noticed Bleus eyes were unstable and he had a slightly increased head circumference. Bleu was taken for a scan and placed on the neonatal unit for monitoring and by morning his health had rapidly declined.
Heartbreakingly, Bleu's scan showed severe fluid on the brain and a tumour. He was transferred to Kings College Hospital, without Mum who was in recovery from a C-Section. On arrival Bleu was sent for an emergency MRI and to the operating room to remove the fluid. Unfortuantely, Bleu experienced issues with anesthetic and low sodium levels triggered fits, causing complications with operating. The team at Kings successfully managed to inserted drains to relieve the pressure and worked around the clock to improve Bleu's stats to continue with surgery a couple of days later to remove the tumour and to test if the tumour was cancerous.
Brave Bleu had a line put into his neck to aid in taking bloods easier, without further discomfort and moved to the critical care unit as his metabolic systems were unstable. Due to continually dropping sodium levels the medical team postponed Bleu's second operation, however this did mean at day 12 he could have his first bath...which he was not impressed with! What baby is?!
In preparation for surgery, the medical team inserted drainage tubes with a needle through a tiny port already inserted into Bleu's head during the first surgery, this was then attached to a draining machine until his second operation. The procedure only took half an hour and he wasn't in pain but it meant Mummy and Daddy were no longer allowed to hold their precious two week old baby.
At 17 days old, Bleu was taken down for his second brain surgery with the world renowned Neurosurgeon, the surgeon who flew out to operate on Michael Schumacher, Mr Christopher Chandler. The brave parents held Bleu's hands whilst he went to sleep and then prayed for the safe return of their beautiful baby boy in the chapel. Thankfully, Bleu woke safely and returned to his anxious family.
Following surgery Bleu was placed on continual morphine to manage the pain and sent for a follow up MRI. The little fighter managed to have it without a general anaesthetic just a feed and swaddle! :)
The doctor arrived with mixed news, firstly, the tumour was not cancerous. The news the family had waited to hear for 18 days. Unfortunately, the MRI showed that the tumour is attached to important structures and
there is more tumour at the back of the brain and inevitably, Bleu will have to have at least one more operation, potentially multiple surgeries to remove the tumour in stages.
Ongoing monitoring and tests bring us up to today!
Bleu is now 3 weeks and 2 days old. His sodium levels are still being a pain and 4 hourly bloods and urine samples are having to be taken to monitor. He's sodium has been upped orally and he is also having it intravenously.
The incredible team at Kings have introduced a hormone called fludrocortisone which will hopefully help his tiny kidneys stop flushing his much needed sodium away.
The dietician has put a high calorie powder to his small feeds to help him nutritionally as he is losing weight dramatically. He's also had to be put back on continuous drip feeds now of 14mls an hour because he keeps vomiting on his bottles and meds.
Clamps were being applied to his head drain yesterday to see if his system would disburse his fluids internally, but after 15/20 hours his incision on his head started filling with fluid and his eyes became unstable with pressure again, so they've decided to unclamp again until his next major brain operation which will hopefully be in a couple of days.
Mum and Dad are doing remarkably well, their strength is inspirational. However, they have received the news that once compassionate leave finishes this week the father will have to take unpaid leave or return to work miles away from his incredibly poorly son.
Any money raised for brave Bleu will be used to ensure both parents can support their family and remain as positive as possible. Every day Bleu's statistics change dramatically, both parents need to be by his side and they need to be with each other at this devastating time.
My first fundraising event will be on the 30th of April when I'll be participating in Tough Mudder.
Any support would truly mean the world the family.
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