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Teddy's Elephant Dream

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Hello, thank you for taking the time to read about Teddy's story so far.

Teddy was born at 34 weeks (apparently medically well) and went home within 48 hours of birth. (which was actually when he should've been having life saving surgery to live a normal life)

As a first time mom, I kept taking everybody's advice "its just colic or reflux" as I tried all the remedies for them.. Nothing was making a difference. 
By 2 weeks old, my motherly instinct was telling me to take him to hospital and have it investigated. In the next 2 weeks I had taken him to 2 hospitals and the GP surgery only to be told I was a first time mom overly anxious and had possible postnatal depression, however this was not the case at all. 
At 6 weeks old I took him to Birmingham Children's Hospital and sat in A&E until they admitted him to the surgical ward for thorough investigation! We were in hospital for 2 weeks, so at 8 weeks old he took a bad turn for the worst, had an emergency barium scan which shown he had Malrotation of the bowel, Situs Inversus of the abdomen, severe Stenosis, Bowel and Intestinal Adhesions. Due to the severity of his condition and how long it had been left to deteriorate Teddy was in critical condition with an internal bleed caused by a 360 degree twist in his bowel.

Teddy had major corrective surgery which the surgeons were happy with and thought he'd be able to live a "normal" life. After that surgery we realised he couldn't eat orally without being in pain and blockages due the slow motility of the gut, which required regular washouts up his rectum to clear the blockages... nor could he gain/maintain a healthy weight. He had temporary TPN feed through a PIC line into his main artery in his heart. Followed by a NG tube placed to feed a Triple calorie milk over 22 hours a day.

At this point Teddy had spent all of his life in hospital and had severe development delays. We were then told he was classed as "life limited" and nobody knew what the future would hold for him.

All of his symptoms were just getting worse by the day and he now couldn't tolerate any food or fluids down any kind of tube. He was drastically losing weight and he started aspirating into his lungs which gave him reoccurring chest infections and pneumonia common with a NG tube as they are a temporary measure. 

At 15 months old, he still wasn't allowed out of hospital as he was too much of a risk. He then had a operation called Fundoplication which is a tie at the top of the stomach and bottom of the oesophagus due to him damaging his oesophagus. In hope that this would stop vomiting as much.
He also had a Gastrostomy fitted into his stomach wall as a permanent feeding device. The Fundoplication had many complications leading him to have dumping syndrome, hypoglycaemia, swallowing difficulties and now he has to go on "drainage" via his gastrostomy to relieve his stomach bile due to him being unable to vomit at all. This made Teddy so poorly, the consultants had no idea what to do so they referred him as an emergency case to Great Ormond Street Hospital for 3 weeks where he underwent 7 investigational surgeries. After this admission we came home with an amazing plan and a supportive community nurse, we felt as if our live's were getting as normal as they ever could be. (I am unable to work due to being Teddy's trained carer) 

On the 24th December 2018 Teddy started having seizures which immediately alarmed his consultants and sent off emergency referrals for an EEG, CT Scan and MRI. 

In March 2019 Teddy suffered a severe Tonic Colonic Seizure which lasted for around 2 and a half hours. Within this time, he lost his balance and the ability to walk. He then got an infection in his head which caused periorbital cellulitis losing his eyesight due to the pressure and swelling around his brain. At this point none of us knew what to expect but he then got diagnosed with Temporal Lobe Epilepsy on the right side of his brain which had travelled to other parts of the brain causing the damage of his big seizure. 

We are so thankful that he gained his eyesight back and the limited ability to use his legs and balance as he did before. Some days he could have 2 seizures, others he could have 20. Due to this, he's came home with a wheelchair for when he's too tired, legs aren't working or long distances. Another referral has been made for an urgent foam safety helmet to protect his head when he falls during a seizure.

We as a family, endured a lot of heartbreak during this time however Teddy's high spirits kept us going. The only thing that would keep him in positive spirits was to plan adventures for when he came home. Teddy is utterly obsessed with Elephants, Monkeys and 'flying air busses' (an aeroplane in his words!) 

We've decided that now we really don't know what the future holds for Teddy, we want to make a lot of amazing memories and make his wish come true before his 3rd birthday that's coming up. 

(All donations will be contributing to his flights, accommodation and excursions. Also for his padded helmet as he’s banging his head while fitting and the NHS will provide one in 12 weeks!!!!)

This is a big ask, but we're hoping the public could help his dream of going to Thailand to bathe with the elephants come true. No matter how big or small, we are so thankful and appreciate every donation made.

#teddyswish #getteddytothailand

 

(sorry for the essay, thank you all for reading)

 

Organizer

Phillipa Conroy
Organizer

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