Our Pal - Kayley K

Story written 2005

Kayley was diagnosed with cystic fibrosis when she was 1 week old. When Kayley was 48 hours old, doctors at her hospital had to give her a life saving bowel operation (Meconium ileus) as her bowel was at bursting point. It was from having this that the doctors went on to test her for CF which came back positive. Kayley was in the intensive care unit for 4 weeks during which she was recovering quickly.

When Kayley was 6 weeks old I took her for a routine check up at the clinic and I was told she had a slight chest infection. Kayley was admitted immediately for 2 weeks IV’s. Whilst Kayley was in hospital she picked up Bronchiolitis which left her so ill she was deteriorating very quickly and nothing that the doctors seemed to do would work. They recommended that Kayley be christened straight away; this happened at 7pm that same night.

Kayley was so ill she could not be moved to intensive care, so the much needed machines were brought from intensive care to Kayley’s ward, where she lay ill for 4 months. Once she turned the corner she seemed to bounce back and it was lovely to have her at home.

When she was 1 she had her Potacath Gastrostomy button put in her tummy. A few months later, during all of this, Kayley was admitted loads of times for IV’s due to recurrent chest infections.

Kayley has fought off septicaemia 3 times. She has had numerous Potacath infections, that is why she is now on her 5th Potacath and this is situated in her groin. She has also fought off a really severe case of Glandular Fever as well as Pneumonia.

Kayley is now on the active transplant waiting list for a new heart/lungs, she has been waiting since August 04. We have just come back from London as Kayley won the New Life award it was a really special night for her and I was so proud of her.

Currently Kayley is ill again, and she is back in hospital. Her time at home seems to get shorter; she was only home for 2 weeks before this admission. It’s been like that now for about her last 9 admissions but she doesn’t let it get her down. Although she gets depressed quite a lot she hides it with her smile.

Update 1st April 2006

Kayley has been very poorly in hospital. She has Cystic Fibrosis and is 5 months post transplant. She has just recently been diagnosed with Diabetes too. She is in hospital at the moment and we are still awaiting further blood tests.

We think Post Pals are wonderful, they have brightened up Kayley’s darkest says. Thanks to everyone who has sent letters and parcels to Kayley in the past.

Update 27th March 2006

Kayley is back on the Current Pal list as she is in hospital.

An update from her Mum;

We are still not 100% sure as to exactly what is going on with her, we are still awaiting all different test results to come through. They say that she has more than likely developed diabetes, and that there are problems with her kidneys. Her anti-rejection levels are also very high and her white blood cell count is really low. She has been in hospital since Friday where she is receiving IV antibiotics and drip fluids; she has also been getting excruciating stomach pains.

Update January 2006

I have placed Kayley on the “moved on” page due to lack of contact from her family, we are told that Kayley is doing well health wise though. Thank you to all those who took the time to support Kayley.

Update 22nd October 2005

Kayley is going home today!

Update 13th October 2005

Kayley has had some set backs the past week with temperatures and choking, which turned out to be a slight infection rather than rejection. She is due to have another biopsy next week.

Update 7th October 2005

Kayley is doing well she had a little set back the other night but she seems to have picked back up and she is a lot better now.

Update 5th October 2005

Kayley has come out of theatre and she is now awake. she is fine and her new lungs have been cleaned and had a biopsy (to check for rejection)

Her mum said she has colour in her cheeks for the first time, and the rings under her eyes have gone, she has been moved onto a normal ward (Ladybird), and has her appetite back.

Update 2nd October 2005

Kayley has had a chest drain taken out and is doing really really well…. the first things she said when she came round the first time were “I want some lucozade” & “I want me knickers on”.

Update 1st October 2005

Kayley is now awake. She is eating and drinking and has also been walking around the ward.

Update 27th September 2005

Written by Leanne;

The operation went OK but she’s not out of the woods yet. Kayley will be under sedation for two weeks now because if she came to the pain would be too much for her all at once. They are saying that the next 24 hours are vital; her body needs to accept the new organs. We’re praying harder than ever that she can pull through.

Update 26th September 2005

Last week we received a lovely email from Kayley saying how much she like the cards and gifts she has been sent, and that they have made her very happy, I didn’t get around to updating this page and we have just heard that Kayley had her transplant last night!! She got the call and was transferred to Great Ormond Street, she has come through the surgery, but the next 24 hours are critical. I will update when I hear any news, or speak to Kayley’s mum.

Update 17th September 2005

Will you let people know that Kayley is on the mend now and thank everyone who sent her cards and emails for me please.

Update 15th September 2005

Kayley has been diagnosed with Aspergillus, which matty also developed (and caused him a lot of problems). They are also doing more bloods and cultures to see if she has a port infection.

Update 13th September 2005

Kayley is back in hospital again. She is really unwell her resps are really high and her breathing is very fast, she is also a terrible colour, I am really worried about her.

Update 15th August 2005

The other day Kayley was allowed to leave the hospital for a while, to be a DJ for her local radio station!

Kayley came out of hospital earlier on tonight (sunday) so we are off to devon cliffs for 12 days.

Update 3rd August 2005

Despite Kayley’s big night (staring on a TV program), during the morning she did some filming and was in the news, and in the afternoon attended clinic and was admitted as she has lost 4 and half pounds in 2 weeks.  If you watched the program please be sure to drop her an email to say you watched.

Update 14th July 2005

Kayley was able to come home last saturday afternoon, she went into school on monday for the first time since before easter and today she is actually doing her very first sports day.

Update 29th June 2005

Kayley has been really ill in hospital. Her weight has dropped just below 3 stone now, but the good news is that she’s on the mend. She is such a strong minded little girl who keeps on fighting.