Daisy Palmer Trust
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Daisy was born 7 weeks early in September 2003. From the very early days it was clear Daisy struggled with feeding. She would either projectile vomit, or be constipated. No two days were the same. She was never a happy baby and would cry most days and nights.
Eventually we took her to see Dr Nigel Meadows at the Royal London Hospital in Whitechapel, where he carried out many invasive tests on Daisy, including among others Barium Meal, PH Studies and MRI scans. These tests confirmed that Daisy had severe reflux and delayed emptying of the stomach, as well as severe constipation.
(Daisy with NG tube, August 09)
Daisy was prescribed many different medicines to help combat these problems, and we plodded along for a while like this. She would have up and down days, but by and large the medicines help to keep her discomfort at bay.
After a while, Daisy's condition began to worsen, and she had to undergo several more tests including a small bowel manometry. This showed that Daisy's digestive system was not working in the way that it should, causing her lots of pain and discomfort. Following this, she underwent a full thickness biopsy which finally confirmed Daisy's condition as Chronic Intestinal Pseudo Obstruction (CIPs) at the age of 5.
Despite the many medicines Daisy was taking to prevent such things, she would still projectile vomit on bad days, and would even pass out when the pain became severe.
In May 2009, it was suggested that Daisy had an Ileostomy at Royal London Hospital to help reduce some of her pain. She had the operation in June and soon it became very clear to the Doctor's that her digestive system was a lot worse than they first thought, and was unable to break down and digest her food properly. What she was eating would pass through her and into her Stoma bag almost the same as when she had eaten it, undigested.
Following the operation and whilst staying in the hospital, Daisy had to have an NG feeding tube inserted through her nose, and down into her stomach, with a pre-digested milk fed down it to help build her strength back up. She was referred to Great Ormond Street Hospital Chronic Pain Team with the hope that they could come up with the correct medicinal solution to help combat the pain better. Daisy was prescribed even more medicine just to help her cope with every day life, including morphine for when the pain became extremely severe. She was then put on an experimental low fat, liquid only diet to see if it prevented the pain, and eliminate the undigested food problem.
By the end of January 2010, Daisy had become quite weak and unwell, and was re-admitted to Royal London Hospital again. After one week, the Doctor's decided to fit Daisy with a Gastrostomy Tube directly into her stomach via the abdominal wall, also with a Jejunal PEG inserted through this and directly into her small intestine, as well as a temporary intravenous Long Line, in case the Jejunal PEG did not work.
Daisy struggled to take the Jejunal PEG feed, so she had to revert to the Long Line feeding method. Shortly after this, Daisy was fitted with a permanent Hickman Line (Long Line), directly into the arteries of her heart. This is known as Total Parenteral Nutrition feeding. (TPN)
After many different good and bad days in hospital, including several nights in intensive care after a massive stoma prolapse, several more operations and also once we had become trained to administer Daisy's intravenous feeding methods, she was finally allowed home, over 6 months later in August 2010.
Daisy spent a great 3 months at home, and we all coped really well with these new structured routines, spending 14 hours per day being fed her TPN via her machine. In October the Jejunal PEG exploded out of her stomach due to the sheer build up of pressure inside her. Then at the start of November 2010 she picked up a severe infection in her Hickman Line, and was again re-admitted into Royal London Hospital.
Unfortunately the Hickman Line had become too severely infected and could not be saved. So Daisy needed another operation to remove this, then her body given a chance to fight the infection, before having a new Hickman Line fitted.
On the 22nd December 2010, Daisy was again allowed home, just in time for Christmas. After the year we had all had, that truly was a great Christmas.
She still has the Gastrostomy Tube, now without its Jejunal PEG, but this is only used to pass medicines directly into her stomach using a syringe, as when taken orally she cannot digest them and get the full benefit.
Daisy now cannot eat anything at all orally. She just has 3 or 4 'shot glasses' of clear flavoured water each day, and that's all. About 100mls in total.
Daisy is currently at home and able to attend School for a couple of hours each day, depending on how well she is. She very much enjoys School and loves being with her friends, just like any little girl of her age should.
Everything now needs to be structured around Daisy's feeding times, especially as the volume has recently been increased, to mean she now spends 18 hours connected to the machine. She is constantly on a very high dose of several painkillers, including Fentanyl, which seems to help her get through the day.
Daisy has always been a happy little girl, despite her problems, she takes each day as it comes, and everything in her stride. But not a day goes by without her saying at some point "I feel sick and my tummy hurts"
Other problems for Daisy include many aches and pains and hyper mobility in her joints, which means she has to rest often.
Our mission now is to just make Daisy's life as comfortable and enjoyable as we possibly can.