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LoveQuiltsUK - Finley C's quilt

Finley C's quilt   (Quilt Coming Soon)

Born:2012
Illness: Bronchiectasis

Theme: Disney Characters (all)


Quilt will open soon, keep checking back!
Photo of Finley C

Child Interests

Finley loves Disney, doesn’t matter if it’s princesses or princes. He loves sparkles/sequins.
He loves books and loves mum and dad to read to him. He loves animals and teddies especially jelly cat teddies. He has more teddies than we can fit in his room. He has a favourite snuggle blanket which has rabbits on it and takes it everywhere
Finley loves to play with small figures and sensory toys.
He doesn’t have any favourite colours.


Biography

When Finley was born he appeared a very healthy little 8lb 11oz baby.
In the first year of Finley's life he was continuously vomiting, had two severe bowel infections and numerous chest infections. Finley also suffered from severe constipation. He was given medication and a thicker milk to aid his vomiting, Finley gained weight but very slowly.
Finley went to DRI for some blood tests to see if he was maintaining his vitamins, they showed he had deficiencies and also low lymphocytes. He would have to have regular blood tests to monitor this.

He was referred to a paediatrician at Scunthorpe Hospital and diagnosed with a milk protein allergy. Once Finley started weaning he would come out in severe hives all over his body.
Finley was referred by the health visitor to DRI for autism testing as he had a temper and wouldn't play or eat with other children but they thought his health was causing his bad behaviour.
One day Finley was given scrambled egg, his lips,eyes and throat started to swell, Finley was going into anaphylactic shock. He was diagnosed with a severe egg allergy. He was diagnosed with more food allergies and continued to be severely constipated.
Finley was 3 and in severe pain all of the time and was referred to a bowel surgeon from Sheffield Children's Hospital who arranged for Finley to have surgery for a bowel blockage. Finley was also giving botox injections into his bowel to help his bowel muscles work. They also fixed his prolapsed bowel. During and after surgery they noticed Finleys SATS kept dropping but thought it was due to anaesthetic. Finley for a while would keep going blue round his nose and mouth and would go vacant.
Whilst at Sheffield we were speaking to a nurse in regards to food after surgery, as we didn't know for sure all the things Finley was allergic to. She advised a referral to the allergy team at Sheffield.
Finley saw the consultant, dietician, had blood and skin prick testing and was diagnosed with more food allergies and also allergy to cats and dogs and penicillin.
Finley cotinued to get infections on his chest and throat and still continued to get hives and went into another anaphylactic shock to shellfish.
Finley continued to receive antibotics and saw the allergy team at Sheffield who referred him to the respiratory team for an EEG which came back normal. The respiratory team prescribed more antibiotics, changed inhalers and arranged for a bronchoscopy. Finley had streptococus pneumonia in both lungs so he had iv antibiotics. The tests also showed cobblestone appearance of the gullet and throat. Finley also started to receive appointments for lung pyhsio and lung function tests. Finley also showed in his blood tests, he was not building immunity so had to have regular boosters to try to maintain the level of infections he was having. Finley continued to get the infections and went back for surgery for a PH study.
This showed severe reflux and aspirating into his lungs. Finley was given a high dose of medication to aid this.
Finley was also diagnosed with an allergy to the sun and xanthan gum.
Finley continued to go to surgery for botox injected into all parts of his bowel every 6 months.
Finley went to see the gastro team again for biopsies of his stomach, gullet and oesophagus and a bravo PH study.
Finley also saw the respiratory team and underwent more surgery to clear his lungs and have more iv antibiotics.
Despite the high dose of medication it was not working and the biopsies showed that it was causing abnormal cells in his gullet. Finley would require a fundoplication to stop the reflux as if not the abnorml cells would turn cancerous.
Finley went to see the respiratory team who told us that Finley had bronchiectasis.
During surgery they found a large hiatus hernia so they had to repair this also. Finley also had a port fitted so that he could receive long term antibiotics.
Finley continues to receive a lot of support from the respiratory team to aid his lung disease and takes a lot of medication, nebulisers and long term antibiotics to aid his lungs. Also daily lung pyhsios to prevent build up of mucus.
Finley also continues to suffer from constipation and now receives daily bowel wash outs, plus the numerous amounts of medication to aid this. Finley is still under investigation for his bowel.
Finley also continues to experience hives and receives a lot of support from the allergy team.
Finley is undergoing genetic testing as to the cause of all his problems.
Finley has also received support from the pyhsio team as Finley would complain of pain in his back, legs and hips. He was diagnosed with Scoliosis. He receives daily physio at home and school.
Finley is unable to walk long distances and requires a wheelchair due to breathlessness and pain. However, he is happy as it has flashing wheels.
Finley has again been referred for autism tests as his health is suffering due to the lack of food he will eat. He has now stopped growing due to this and has been referred to the gastro team at Sheffield.
Sheffield Children's Hospital have saved Finley's life. If it wasn't for them Finley may not be here today.






















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