Help Ella get home

Please take a few minutes to read our story. My beautiful daughter Ella is currently in hospital with intestinal failure, she has not been able to eat, drink or even take medicines orally for 21 weeks now.

 She has been poorly now for 7 years but i believe the intestinal failure was a result of doctors not taking my sepsis concerns seriously, meaning she was left for over 8 hours without treatment until it became severe sepsis and she needed to be taken to ICU. I believe the complications wouldn’t be as severe as they are now if she had been treated sooner. She never presents with the usual symptoms but i always tell medics this. When you have M.E. everything gets ignored or dismissed and your body fights against you.

 She was diagnosed with M.E/CFS at age 11 and it has been a downward spiral since then. She was a fit and healthy girl who loved gymnastics and sports before the age of 10, always on the go and full of energy. She has not been able to go to school for 3 years and only went part time before that, but still managed to get amazing GCSE results and is now trying to do her A levels from her bed.

She suffers with severe M.E (Myalgic Encephalomyelitis) and got diagnosed with PoTS (Postural Tachycardia Syndrome) last year.  Her bladder shutdown in 2019 following an infection and she needed an operation for a Suprapubic Cystostomy; she now uses this device to empty her bladder. No one believed her or me about the bladder problems she was having until it got so bad she was rushed in as an emergency. Since her operation she has been plagued with UTI’s every couple of weeks and numerous admissions to hospital with serious infections but she has always recovered to a degree, weaker than before but always came home again, not this time though. She has so many things medically wrong with her, she is bedridden, in constant pain, severe migraines, total weakness, unable to walk, sensitive to lights and sounds, coeliac, brain fog, unable to eat or drink and even unable to do basic care for herself. But this time is different - I cant take her home.

 All her medications are delivered through her JEJ tube or intravenously. She has an Peg tube removing all the bile that just sits in her stomach too. She is fully dependent on TPN (total parenteral nutrition), this way of feeding her does not come without risks and only a few hospitals in the UK can facilitate this, thankfully St James’s in Leeds,  near us, is one of them. This has devastated us. We thought she was poorly before this admission but now, everything has changed and very unlikely to get better.

 The doctors are managing to keep her alive but cant come up with a plan to “fix” the intestinal failure. Nothing has worked so far. We think she has a very rare condition but as yet its unidentified, some sort of severe autonomic dysfunction.

 Autonomic dysfunction is usually a multi-system disorder. We need answers. We need hope. We need to find experts on rare conditions and intestinal failure. She has just turned 17 and her age makes everything very difficult in the NHS, she has so many conditions that we will never find a ward or one doctor that can deal with everything, the NHS has a massive waiting list. There are just not enough specialists for all that is going on with her. We have found an expert on intestinal failure but he has a private practice in London so would need to pay for consultations. Her treatment has to be with the NHS as its too serious for private hospitals, but i want to speed up the testing and diagnosis by going private. I have a feeling i will need to have numerous consultations with various specialists before i can find someone to help. We need neurological and neurogastroenterologist  expert. We have been told she could be in hospital for another 6 months at least.

But she keeps getting infections whilst in here (Infections and Sepsis are the biggest risk to her now); she has had 2 in the last month. We know there will be more, its expected with central lines and TPN. Last week her liver results were abnormal and she now has gallbladder sludge that needs treating.

 Her body has shutdown. The future feels very uncertain right now but i know i cant do it alone. The downstairs of the house will need to be altered to take her new non mobile condition. We struggled so much before this. Sterile areas, extension for downstairs wet room, change dining room into bedroom, equipment, rewiring and extra plug sockets etc, so many things are on the list but the most important and first on the list is getting a diagnosis and seeing experts that can deal with all her conditions, or at least the most disabling ones that are shutting her body down.

 I am at the hospital for at least 11hrs a day 7 days a week so will need people to do the work as i also have a chronic spinal condition and am struggling beyond words, the costs of 10 weeks in hospital have already gone through the roof and stressing us but thats nothing compared to what my daughter is going through. Our family has already fought through the death of my mum, 2 cancer diagnosis’s & a pulmonary Embolism to name a few in the last 3 years alone and then everything that has happened to Ella on top. Please help us to carry on fighting for answers, make the changes and meet the cost of everything needed along the way so i can hopefully bring my beautiful girl home before Christmas. We are strong warriors but even they need a helping hand from time to time.

I recently did a birthday card appeal for Ella and had a fantastic response, over 1297 cards were sent to her to make her birthday in hospital better. The smile was priceless. The community showed great kindness, so sorry to do it again but i am asking for help. If you can afford a couple of pounds then please donate, it all adds up and i can start making phone calls and planning for the future. I cant let her story end here, somebody somewhere can find a beautiful ending for us. She has an infectious smile and a cheeky nature so i long to see that side on a regular basis instead of the pain and the tears i see every day. I will post regular updates on how she is and where we are up to. If you cannot donate then dont worry, please do your bit by sharing the appeal. Thankyou
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Joanne Mckee 
Redwood Avenue, Tingley, Wakefield

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