Welcome to the team page for Super George's Army - Fundraising Appeal.
We have many people joining Super George's Army, to raise vital funds, so we've joined together to reach the £25,000 goal. Come on #TeamSuperGeorge!
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To say thank you to Nottingham’s Queens Medical Centre hospital for saving our son George’s life over and over, we are hoping to raise £25,000 for the Neonatal Intensive Care Unit. It’s a long story, but this tells you everything.
SUPER GEORGE’S STORY SO FAR
Our beautiful baby boy, George Arthur Parkins, was born on Saturday 9 September 2017 at 4:15pm at the Royal Derby Hospital, after a horrific 36 hour labour, weighing a healthy 7lb 6oz. The moment George entered the world was the most amazing, precious, incredible (and painful for me!) moment of our lives. But our world quickly turned upside down.
After George had a brief cuddle with myself and my husband, something wasn't quite right; he was taken away for checks, and never came back to us in that room.
He was born with no bottom hole. Emergency scans and X-rays were done to determine if there were any other complications. There were sadly many. He was taken to the RDH Neonatal Intensive Care Unit, and placed in an incubator, with all sorts of monitors over his tiny body. I cannot describe the mixture of emotions and heartbreak at this point. Our tiny little baby, so very poorly.
Late that evening, our mums were invited to the hospital to say a brief hello, and possibly goodbye, to their new grandson before he was transferred to QMC in an ambulance. We were told there was a 50/50 chance of survival. It was the worst moment of our lives.
George thankfully survived the journey, and at just 13 hours old, on the Sunday morning, he underwent a six hour operation. The consultant was called in to operate at 5am as an emergency, as George had deteriorated
George’s daddy had to follow the ambulance to Nottingham in his car, but I was too unwell to leave RDH. My heart rate was dangerously high and I had lost a lot of blood. For the first time in a long time we both prayed.
Through the night the amazing labour suite team worked hard to ensure I was well enough to leave the following day. I was transferred to QMC by ambulance the next morning and admitted as a patient.
George was in the Neonatal Intensive Care Unit at QMC for a month, on numerous drugs, morphine, oxygen, chest drains, catheters, feeding tubes and had many cannulas. He was on a ventilator keeping him breathing in an incubator in the beginning, and intubated again a few days later. We were told after the initial surgery we could potentially expect to be in hospital for 7-9 months but he is an absolute miracle and fought hard. We went home and were able to toast his one month birthday just a few days later, with our closest family joining us to finally celebrate.
George was born with Tracheo-Oesophageal Fistula (TOF) and Oesophageal Atresia (OA); rare congenital conditions of the oesophagus (food pipe) and/or trachea (airway) that affect one in every 3,500 babies. (www.tofs.org.uk/about-tof-oa.aspx)
As well as being born without a bottom hole, known as an imperforate anus, his bowels were there but tapered off to a blind end, not reaching where the bottom hole should have been. Everything had just stopped forming a bit soon. He was born with two holes in his heart - a VSD and a PFO, which amazingly are closing on their own. George is still monitored by the wonderful Dr Thakker at QMC, and has regular ECG’s and ECHO’s.
Despite working for the BHF for the last nine years, nothing prepares you for your baby being born with a congenital heart defect. None of the problems were diagnosed before George's birth, so everything was a complete shock, and hit us hard.
On day five after George was born, we finally got cuddles; we got to hold our baby boy. I've never felt such amazing love and pride and emotion. Not being able to hold our new baby for so long was heartbreaking.
Personally, I was in a wheelchair for nearly two weeks and a patient at QMC for 10 days, really not very well due to the extreme blood loss and high blood pressure. I couldn’t focus on myself, as my little energy was spent sitting next to George’s incubator, for hours and hours, day after day.
My husband was incredible and cared for both his wife and new son, through a terrifying time, and I’ll never be able to thank him enough for his strength, love and endless unconditional support.
George had a stoma created, known as his ‘tum bum’, as the bottom hole couldn’t be made in that initial operation as he was so fragile. He went home with a feeding tube in his nose which went straight to his tummy. George was fed through this for a few months.
We were trained in CPR, stoma care and the feeding tube whilst in NICU, but as there wasn’t a special room, it was done in staff rooms, on the unit, and in any spare room.
My husband was given a parents room to stay in, down the corridor from George, and when I was discharged, we stayed there until we all went home together after that first month. We didn’t leave George’s side.
We had a lovely week at home but George started struggling with feeding and breathing, so we quickly took him back to QMC’s children’s A&E - he was admitted onto a ward. There are no rooms for parents when babies are on a ward (only when in intensive care), so I had a pop up bed by George, and my husband slept in an arm chair. We spent six days on the paediatric ward and never left. George underwent his fourth operation, which was his third "stretch" of the oesophagus, known as a dilatation. He was always due the dilatation the following week but we didn't expect to only get one week at home. We were told he would need to keep having his oesophagus stretched and made wider. For a few months, these procedures were weekly, then every 10 days, then fortnightly, monthly and he now hasn’t needed one since earlier this year.
We were delighted to go home, again, and looked forward to spending time together as a new family. Just days later, George's breathing was getting noisier, and he was working harder and harder to breathe. The noise can be quite ‘normal’ as part of the TOF condition. By the evening he started to go grey in the face and was more floppy compared to normal, so we shot off to QMC’s children’s A&E again.
This time something was different. Numerous medical staff were rushing around and had him on oxygen immediately, sending him for urgent X-rays and tests. We knew something was really wrong. He was admitted onto the Paediatric Intensive Care Unit, and put on a CPAP machine to give him oxygen and keep his lungs and windpipe fully open. He had to be sedated as he hated it so much. He was distressed and fighting it, but so weak. It’s a moment that will haunt me forever.
For two days he was too poorly to be operated on. The following day was another one of our worst days ever. George went for his fourth stretch (dilatation) operation but the ENT team also joined our surgeon and his team to have a look in his airways. The dilatation was a success, and hadn't closed as much as suspected which was positive.
Unfortunately, ENT found that over the previous six weeks, his larynx had been damaged due to the number of ventilators through the procedures he had - which resulted in the breathing problems and increased noise from him. The trachea had shrunk worryingly small and he was exceptionally lucky it hadn’t closed altogether. They told us it's a good job we didn't wait to bring him in as his airway was the size of a pin head.
George was too small to have it all repaired, so he had to have a tracheostomy. We had to give consent one hour into the operation which was absolutely horrific. There were no other options. Alternatively he would have been sedated and on a ventilator until we consented.
The minutes felt like days, as we waited for him to return to PICU. Our precious baby boy was then hooked up to so many machines. His face so swollen it didn’t look like him. It took a while to adjust to the situation and how our lives had changed so dramatically. We spent 11 days being taught how to manage the tracheostomy; changing the tapes around his neck daily, changing the trachy weekly (which is more like every other day), suctioning, and how to perform CPR on a baby with a trachy. We were told he wouldn’t be able to talk until the repair operation. For months there was not a single noise - not even a cry or a cough. Just silence. The hardest thing for me was not hearing him laugh.
George needs 24/7 care so I extended my maternity leave to care for him.
In February 2018, we went to GOSH for them to have a look at George, and put a long term plan together. We believed it would be a scary and long road ahead but we had our precious son and felt very blessed he was so happy, smiley, beautiful, and still with us. We initially believed the trachy would be in for 2-5 years which was a daunting prospect. However, after visiting Great Ormond Street Hospital, the amazing surgeon said he would perform the surgery when he was one. He is due to be operated on just after his first birthday in September. He will be asleep for a week, and then in hospital for a further week to recover.
In the last year George has had 15 operations. Many have been dilatations of his oesophagus - in effect, stretching it as the repair site shrinks when healing. They were weekly, then fortnightly, and now he hasn’t needed one for months. George also had a bottom hole made earlier this year, and his bowel brought down. A few months later they reversed his stoma, and the tum bum has gone! All his little wonky bits, as we fondly call them, are being fixed one by one.
He is a hungry baby and really loves his food and milk. Weaning is going well, but we take things slowly and steady so as not to rush George.
The trachy reversal and reconstruction of his airway is a huge operation, and it’s scary. But George has overcome everything amazingly so far. Our little star has learnt to override his trachy, and can chat and babble, laugh and cry! This is just incredible and unbelievable.
George has been through so many scary ordeals, and been admitted to QMC’s Paediatric Intensive Care Unit a number of times with bronchiolitis, and other viruses of his airway.
George was ambulanced to QMC very late one evening due to a respiratory virus that made him extremely poorly. We feared we were losing him yet again, as we waited for the ambulance. Opening the windows and doors, with all the lights on, singing, dancing with him in my arms, and calling his name over and over, just trying to keep his eyes open.
We are trying to raise £25,000 to fund a parent’s education and training room; a nice, warm, welcoming environment for parents of babies with a variety of complex issues to learn how to care for their baby.
Our son is known to friends and family as Super George, and the room is to be named after him. It will be a lasting legacy at the hospital.
We have met some truly amazing people at QMC - including other parents and staff. We owe everything to Mr Davies, Mr Colliver and Mr Daniels, George's surgeons. We spent a month in NICU where the staff are real life superheroes. The team in PICU are always very kind to us during our time there, and consultant Dr Davies really listened to our concerns and pushed to ensure someone from ENT reviewed George urgently as he knew something was gravely wrong before his tracheostomy. Dr Thakker, George’s cardiologist and paediatrician, is a wonderful and kind man. Mr Hurley, his respiratory consultant, also supports us amazingly through George’s journey.
We have donated a television to the children’s cardiac clinic already, as the original one was stolen. We now have two more, kindly donated by people we know. We are collecting iPads, tablets and laptops for PICU and ward patients to use during their stay to help pass the time.
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‘SUPER GEORGE’S ROOM’
A training and education room within QMC’s Neonatal Intensive Care Unit
The purpose of the room is to make it a resource fit for the education and training of parents and staff for many years. The aim will be to provide a resource for all aspects of education and training with some examples including:
- Environment suitable to teach parents/carers the important skills of resuscitation in the unfortunate event they need to use these skills at home.
- Training parents and staff how to change tracheostomy equipment safely and what to do if things don’t go according to plan.
- Pit-stop training for newborn resuscitation – training all the team to plan and undertake newborn resuscitation to improve the outcomes for babies.
- Education and training resources around breast feeding, infection prevention, stoma care, naso-gastric tube feeding particularly for parents at home.
This multi-purpose room will make it easier to meet with other professionals and parents to plan safe discharge home. Also as a local space for parent groups to meet when needed.
Detailed below is a list of key equipment, resources and furniture needed for the room. This is the ‘wish’ list and we hope to fund it all.
Ø Newborn resuscitation platform and equipment for training £9,000
Ø Breathing equipment for training using the above £3,500
Ø Training manikins – term, preterm and specialist (e.g. tracheostomy, stoma) £3,000
Ø Flip top table (x2) and chairs allowing room to double as meeting resource £1,400
Ø Laptop for training/education – videos/presentations/resuscitation training etc £1,300
Ø Webcam to record training sessions for playback and learning £100
Ø Privacy blinds for room £350
Ø Whiteboard for teaching/education £200
Ø Storage area/boxes/cupboard £400
Ø Installation/commissioning costs £2,400 inc. plaque for ‘Super George’s Room’.
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To make a donation, or for more information about Super George’s Army Fundraising Appeal, visit:
www.justgiving.com/teams/SuperGeorgeArmy
www.facebook.com/supergeorgearmy
www.twitter.com/SuperGeorgeArmy
Email supergeorgearmy@hotmail.com
