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LoveQuiltsUK - Lucy S's quilt

Lucy S's quilt   (Quilt Coming Soon)

Born:December 2014
Illness: Cystic Fibrosis

Theme: Princesses and Female Disney Characters

Quilt will open soon, keep checking back!
Photo of Lucy S

Child Interests

Lucy loves princesses, fairies, ballet dancers, unicorns, ponies and mermaids. She loves music and sings along to the radio and Trolls songs. She loves all colours, pinks and purples particularly but rainbow colours are also a favorite. She has recently watched The Wizard of Oz and loves the ruby slippers! She likes sparkly, sequiny things, the shinier the better!


After a normal pregnancy and birth, lucy lost weight and had difficulty regaining it. She needed to have a 2nd heel prick, from which it was confirmed that she had Cystic Fibrosis, though a full genotype took a further month, due to Lucy having a rare 2nd gene. Her medications began, she is pancreatic insufficient, so needs to have a varying amount of Pancreatin to help her digest food. She initially also had a food supplement, duocal, due to her failing to gain weight. She had a profilactic dose of penicillin to try and protect her lungs, despite this, she had many viral and bacterial infections in her first year, resulting in a diagnosis of Stenotrophomonas maltophilia and RSV. This led to her first hospital stay, shortly after her first birthday. She had a long line inserted for her iv medication, without using a general anaesthetic. After the 2 week ivs, she had to have 3 months of Septrin to ensure the Stenotrophomonas maltophilia had been eradicated, as well as extra vitamin D. Lucy had signs of some Liver disease at this stage, after further tests, she had to start a course of Ursodeoxycholic acid to reduce the swelling of her liver. Unfortunately Lucy had to have further ivs in the following august, she lost alot of weight and a general anaesthetic was needed to insert her long line. Shortly after this stay, she was diagnosed as having psuedonomas aeruginosa. Lucy was selected to partake in the Torpedo study, to see what the best treatment for this dangerous lung bacteria. Lucy was hospitalised in Sept 2016, but due to previous long lines and her small veins, they were unable to fit a successful long line. After a painful and distressing couple of days, lucy was released to have 2x nebbed colomycin a day and 3 months of ciprofloxacin. Unfortunately this treatment did not work, lucy was hospitalised again in Jan 2017. This time a femoral line was inserted into her groin, whilst under General anaesthetic, where she had an allergic reaction to the adhesive used. Though these iv medications did temporarily eradicate the psuedonomas aeruginosa, it did regrow and the decision was made for Lucy to have a bronchoscopy and portacath fitted in Bristol Children's Hospital. It was discovered during the bronchoscopy that Lucy has a minor tracheomalacia but no damage from the psuedonomas aeruginosa, thank fully! After 2 weeks of iv antibiotics, Lucy was released to continue with 2 nebbed colomycin, azithromycin to help break down mucus in Lucy's lungs. Unfortunately continued oral medications did not work and the diagnosis of colonisation was made. Lucy now has 1 hr of physio, 3 nebbed medications, azithromycin, 2 x extra vitamins, frebini food supplement, movical sachets to prevent blockages and creon microspheres a day to try and keep her weight up and her Pseudonomas at bay. She also needs monthly portacath flushes, where a needle is inserted into her chest to make sure the line is clear and there are no clots forming. Lucy has 3 monthly treatments to suppress the Pseudonomas aeruginosa, either iv medications for 2 weeks or ciprofloxacin for 2/3 weeks.
Despite this, Lucy is a whirlwind of 3 year old amazingness, she has started at a nursery 2 mornings a week, as well as starting a ballet class. Lucy had a very poorly winter, but doesn't let her illness interfere with being a normal 3 year old.

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