Our Pal - Holly P

Story written 2015

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 jeg 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 a ileostomy formed, this is where the end of the small intestines is brought to the stomach wall and it’s covered with a bag to collect all the waste products. Holly’s large intestine has failed completely and in the near future Holly will have surgery to have this removed.

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.

Update 15th February 2017

I have spoken to Holly, and as she turns 14 in March she is more than happy to move on from Post Pals and allow other children to be part of this amazing charity like she was.

We would like to thank everyone involved in Post Pals for all of the support and generosity that has been given to us whilst Holly was a Pal.

Update 3rd May 2016

Holly really has not been feeling very well after her last infections and the decision has been made to bring her colectomy forward to this coming Friday. She will be in hospital for some time while recovering.

Update 24th February 2016

Holly has had a tough few months battling infection after infection, sometimes only going 4 days between the end of Ivab treatment before starting the next course of Ivabs. Her team at GOSH will be holding a meeting this week to decide what the next steps are. Holly needs to either have a total Colectomy performed or another stoma formed. Both of these options mean Surgery and a lengthy stay in hospital for Holly. Hopefully by the end of this week we will be told which surgery Holly will be having.

Holly would like to thank Mathew and his mum for the lovely Yellow themed monthly project parcel that she received.

Update 28th January 2016

Holly had a tough month of December battling infection after infection, she needed to have almost continuous IVABs to keep these under control. We now have an appointment with Surgeons at GOSH next week regarding a Colectomy for Holly. They believe her Colon could be the cause of all the infections she is continuously having.

Early January after nearly a year of planning, Holly and  I travelled to San Francisco to meet some Doctors, in the hope that they may have different treatment options or help with a solid diagnosis for Holly.
This was our first time travelling since commencing TPN, it was a rather stressful trip and by no means a Holiday!!! But Holly thankfully remained infection free our few days there.

Holly fell in love with Chinatown there and the huge amount of POPs that they had!!

Update 5th July 2015

Holly was well enough to finally go and visit the pandas at Edinburgh Zoo this month, a trip that has been postponed for the last two years due to Holly’s health. She really enjoyed her visit and actually saw Yang Guang (the male panda) laying down in his enclosure. Unfortunately Tian Tian was feeling lazy on the day of the visit and didn’t come out to see us.

Holly has just started some home schooling (3 hours per week) and we are hoping that Holly may be strong enough to do a few more hours at the start of term in September.

Holly has been overwhelmed with the cards/letters and gifts that have been sent to her during her fist month on Post Pals and each and every one of them has put a smile on her face.