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LoveQuiltsUK - Lucy S's quilt

Lucy S's quilt    (Quilt currently being assembled)

Born:December 2014
Illness: Cystic Fibrosis

Theme: Princesses and Female Disney Characters

Quilt currently being assembled
Photo of Lucy S

Biography

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 January 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, thankfully! 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.



Patterns


1.Disney Tinkerbell, crosstitcher mag June 2009Stitcher: Julie, Portgordon, Scotland
Received

2.Disney a punto croce no 20 Alice in WonderlandStitcher: Karen Hockin, Southampton, England
Received

3.Minnie mouse dress from filesStitcher: Ann Woods, Crimplesham, England
Received

4.Disney booklet CinderellaStitcher: Jackie Rose, Aberdeen, Scotland
Received

5.Love Quilt Files - Princess MinnieStitcher: Kirsty Smith, Bowburn, UK
Received

6.L Q Files Moana in Oval border by BethStitcher: Val Gilbert, Coningsby , UK
Received

7.Snow White from a kit. Head and shoulders with floral ovalStitcher: Jeanne, Texas, USA
Received

8.LQ files Elsa and Anna, sisters forever by Beth FilmerStitcher: Rosemary Binnie, Macclesfield, UK
Received

9.Ariel from LQUK filesStitcher: Diane, Middlesex, UK
Received

10.From World of Cross Stitching Disney chart book Princess Jasmine in square border Stitcher: Sarah, York, UK
Received

11.Belle (either in yellow ball gown or in blue/white dress holding Chip in her hands)Stitcher: Nikki Philipps, Chesham, UK
Received

12.Label Stitcher: Pat Brown, Fareham, England
Received


Squares received

Cross stitch square for Lucy S's quilt
Stitched by: Pat Brown
Submitted: Jun 2018

Cross stitch square for Lucy S's quilt
Stitched by: Julie
Submitted: Apr 2018

Cross stitch square for Lucy S's quilt
Stitched by: Karen Hockin
Submitted: May 2018

Cross stitch square for Lucy S's quilt
Stitched by: Ann Woods
Submitted: Apr 2018

Cross stitch square for Lucy S's quilt
Stitched by: Jackie Rose
Submitted: Apr 2018

Cross stitch square for Lucy S's quilt
Stitched by: Kirsty Smith
Submitted: May 2018

Cross stitch square for Lucy S's quilt
Stitched by: Val Gilbert
Submitted: Apr 2018

Cross stitch square for Lucy S's quilt
Stitched by: Jeanne
Submitted: Apr 2018

Cross stitch square for Lucy S's quilt
Stitched by: Rosemary Binnie
Submitted: May 2018

Cross stitch square for Lucy S's quilt
Stitched by: Diane
Submitted: May 2018

Cross stitch square for Lucy S's quilt
Stitched by: Sarah
Submitted: Apr 2018

Cross stitch square for Lucy S's quilt
Stitched by: Nikki Philipps
Submitted: May 2018


Card

Card for Lucy S
Stitched by: Diane Clifford

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