Thank you so much, Holly has received the quilt today :) she loves it!!!
She currently is very poorly in Great Ormond Street Hospital after needing emergency surgery on Tuesday to remove part of her small intestines that had collapsed.
It's been a rough week for her, but this quilt has certainly made her smile.
I have attached one photo, once we have been discharged and Holly is feeling better I will get some more for you.
Thank you to everyone who helped with this quilt, it is truly a work of art, it's certainly is the talking point on the ward today.
In October 2006 Holly went into our local hospital with an UTI infection and the last 9 years seem to have had the snowball effect, as Holly now finds herself not able to eat and TPN dependent. Holly has chronic intestinal pseudo obstruction and intestinal failure, amongst other issues, and there is no cure for the conditions she has, so we have to try give Holly the best quality of life and minimise her symptoms and pain. However, in doing this, it has meant Holly has had to undergo numerous trips to theatre, stays in hospital and invasive tests.
Holly has a Hickman line; this delivers the TPN straight to her heart. She’s attached to a pump which infuses all the nutrients and vitamins that she needs to grow over 14 hours a day. Holly’s digestive system is failing; she is unable to eat and is only allowed a couple of mouthful of dissolvable food a day. Any more and her digestive system will shut down and Holly will be in a lot of pain and discomfort. The Hickman line can cause serious life threatening line infections, any temperatures over 38.5 means Holly has to be admitted to our local hospital and IV antibiotics started as soon as possible. This is currently happening on a monthly basis.
Holly has a J-Peg feeding tube inserted into her stomach and small intestine. Holly’s stomach remains on drainage, this is to help with pain and to aspirate any fluids that may be sitting in her stomach and causing her reflux/nausea/sickness and pain. The J-Peg tube is there for me to administer the daily medication that Holly needs.
In 2011, Holly had a Mitrofanoff formed using her appendix, one end is attached to her bladder and the other end to her stomach, we pass a thin tube every two hours down this channel to empty Holly’s bladder. Her bladder has no nerve or muscle control at all. During the night due to the large volume of TPN being administered, Holly has a tube taped in place to keep the bladder empty. Holly has suffered with repeated monthly UTIs which has taken its toll on her kidneys. Her right kidney now only has 18% function left and this will be removed once we get to 15%.
In 2013 Holly had an ileostomy formed, this is where the end of the small intestines is brought to the stomach wall and covered with a bag to collect all the waste products. Just 3 weeks ago Holly went into Great Ormond Street Hospital to have a total Colectomy performed as her large bowel no longer worked. Holly is now recovering slowly at home.
Holly has very complex medical needs, she has had far too many hospital admissions, invasive procedures, and days where she just cannot get out of bed. Holly is currently struggling to make it in to school.