Darien G's quilt    (Quilt Completed)

Thank you

Just want to say a massive thank you to everyone for Darien's quilt that arrived with us today. I have done a few pics but my phones not great so I will find my proper camera. As I feel I've not done this beautiful quilt the justice it deserves. Thank you to everyone involved in making it & the fantastic card too. Darien wants to take it to school to show his friends. Once he let's me near it I will do proper Thank yous x

Finished photos

Individual squares

Fabric

Card

Stitched by: Sandra

Biography

At 36 weeks I had a scan which showed ecogenic structure of the gall bladder. Less than a week later I went into labour, Darien was showing signs of of distress so I underwent Emergency c-section. As we awaited the surgical team to access his abdomen, we struggled to get him to feed, he was constantly screaming and his abdomen was distended. He was whisked off to NICU when they placed him on tube feed, he was fed glucose and given TPN as he had a meconium blockage. It took 13 days to clear the blockage with rectal stimulation & washouts. We had our First proper poo at 14 days. He spent 6 days in NICU/2 days in SCUBU then he was transferred to paediatric ward. The respiratory consultant Dr Isles @Addenbrookes came to see us to tell us that Darien had CF, we were instantly whisked off to a separate room to be barrier nursed and kept away from everyone. He was finally allowed home with a Hickman line. Since 8 days he has been on Creon enzymes for everything he eats or drinks with a fat/starch content. Vitamins as he is vitamin deficient A,D & E. Medicines for reflux, to soften stools, to relieves stomach discomfort. Antibiotics to keep potential infections at bay. We moved to Poole in 2011 to give him a better quality of air with the beach so close the salty air is good for him. He has had 6 regrowths of Psuedomonas Ariginosa which is treated by strong oral Antibiotics that increase sensitivity to the sun making days out short & shaded even with factor 50+ on, he is currently on 28 days on 28 days off cycle of Tobramycin nebulised anti biotics to try to prevent the recurrent regrowths. sometimes its treated with IV's.He's had 3 operations just to put in lines for IV's. He had 8 lines put in just for one 3 week course of IV's because the lines kept blowing. He carries out physio 4+ times a day when well, these are chest/back patting & blowing physio to cause positive pressure to open the airways. Even at school he has to carry out physio. He gets no time off, no exceptions & he does it all with a smile. Every chest infection take at least a month to get over. Winter season is especially tough for us as so many people unwell that it's impossible for us to stop him catching them, even when he's on antibiotics. Most treatments are done at home as hospitals are the worse place for him. He can't mix with other children like him with CF due to cross infection. He goes to hospital at least once a month when well which he loves as he gets so much attention. He is on a high calorie diet. In hot weather he has to have an increased salt diet as when he sweats he loses vital salts. He is an active happy child, even when unwell he knows he needs to exercise and we are often found playing at the beach as the salt in the water is great at helping break down the mucus build up in his lungs.