Our Pal - Chloe K

Story written 2005

Chloe was born with Complex Congenital Heart Disease, she has 4 large defects in her heart.

She spent her first year of life in hospital with various related illnesses and underwent her first surgery at 6 months old. She was NG tube fed all this time. At 19 months old she had her second lot of surgery followed 3 hours later by her third due to internal bleeding.

Two days before her 2nd birthday, she suffered two big strokes and was paralysed on her left side. She worked hard over the next year to regain mobility, and did really well, although she still suffers with stiffness from time to time.

She finally managed to stop tube feeding at about 4 years old, but finds it very difficult to eat still. At 5 years old she had her fourth major surgery, and suffered many many complications, she had 12 procedures in 10 weeks and missed the entire of summer 2004.

Its taken her another year to recover from her ordeal, and is on a high calorie, high fat diet, which she finds very tough to deal with, as well as being on many restrictive medications requiring blood tests and limiting her daily life to not being allowed to play outside with other children in case she gets hurt or too tired, or being able to take part In school PE classes.

She is now awaiting the day when she will have to be placed on the transplant list for a heart and lung transplant. She can only get about in her wheelchair when we are out anywhere and tires very fast.

Update 12th November 2008

Rehearsals for The Choir are still going strong and Chloe loves it.

Health wise, all is pretty much the same. She has a check up in December, so we will have more to say then.

Update 1st October 2008

Not much to report, Chloe has got a new wheelchair, this time with big wheels that have flowers on them. She can’t push it much herself, but she does try and feels a bit more independent doing so.

An exciting bit of news is that Chloe, along with other members of her school and various other schools in the area, have been chosen to make up a choir for the new series of The Choir going out next year. She is being filmed lots and is so excited; she loves to sing and had to go through an x factor style audition to be selected.

Health wise everything is as it ever was, we just take it day by day. Her flu jab is the end of October and check up is in December.

Update 2nd May 2008

There isn’t much to report on the health front, but thank you so much to everyone who has sent clip on earrings to Chloe – she is so very happy with them!

Update 3rd March 2008

Chloe had her check up and although she is doing ok right now and they are very pleased with how she is coping, the deterioration in her heart has started and now we start the hopefully years long road to her transplant, but sadly it means she is going to slowly get sicker and sicker. We are taking all the precautions to slow down the deterioration – no exercise at all, no more dancing, or anything that will basically tire her out. She is coping ok with the news, just very disappointed, as you can imagine. She also asked her doctor if she could get her ears pierced and they said no, so we have been trying to find pretty, girlie, clip on earrings. We’re not having much luck, so if anyone knows where we can find some, please let us know!

Update 3rd December 2007

Unfortunately we were burgled on November 24^th and Chloe lost most of her dvds, cds, her playstation2 and her nintendo ds and games. So, the excitement of the Christmas build up is tarnished right now.

We are going to the Roald Dahl museum though on December 11th. Then we are going to Butlins in Minehead for Christmas which will be lots of fun.

Chloe has a check up on December 13th; we will let you know how it goes.

Update 30th October 2007

We went to the nickelodeon kid’s choice awards and they put us at the side of the stage where all the acts came off, so we had a great view and lots of waves from people. Chloe and Harry from McFly enjoyed much flirting, waves, blown kisses and held hands as he waited to go on stage. That’s my girl!! The best part for her though was meeting Josh Peck from her favourite tv show Drake and Josh. He came off stage and walked past her, then turned and came back towards her. He knelt down in front of her, held out his arms and she sat there completely shocked for a few seconds, then leaned forward and he picked her up out of her wheelchair and hugged her tight. He then chatted with her for a few seconds, there were more hugs and then he put her back. As he walked off she looked at me and opened her mouth like a goldfish, then started crying! She was just completely overwhelmed by the experience, but i didn’t tell you that part shhhhh! She met the Harry Potter cast, Shayne Ward, McFly, and all the stars from nickelodeon tv. The only sad part is we weren’t allowed cameras and we kept to that rule. It’s a shame the various teenage girls who hounded McFly towards the end didn’t – they fell over Chloe’s chair, stood in front of her and didn’t care one bit when we asked them to move, but that didn’t diminish what was an amazing day out. The children even got goody bags and glow sticks etc!

Update 8th October 2007

Chloe is doing well and enjoying being back at school. She has a check up in December and i will be able to update more then.

We are going to the Nickelodeon Kids Choice Awards on October 20th after Alex won tickets. We are very excited!

Update 22nd April 2007

As some of you may know, Chloe is in hospital at the moment and is really poorly with a viral infection (vomitus maximus) and her heart wasn’t really coping with the strain of it all.

Update 2nd March 2007

Chloe has had to give up both her dancing classes, she tried so hard but in the end it all got too much for her to cope with. She is very, very depressed at the moment. She is starting to realize that she isn’t supergirl, and that her illness seriously does have its limitations. She is starting to question everything now, and is at a low point.

Update 25th February 2007

Chloe was finally well enough to start dance classes for the first time in her life. Thank you for all the nice messages congratulating her; she loved it but has now had to stop as it was too much strain on her body. She is very upset about it and for the first time in a few years feeling very depressed as the reality of her illness hits.

Update 4th December 2006

Chloe finally got her Flu jab after a big argument with our local GPs saying they were not doing them until January. Chloe’s wonderful CLN got on the case and she had it done in November and was very brave.

Update 31st October 2006

Chloe is feeling much better now and is back at school.

Update 14th October 2006

Just to let you know Chloe isn’t doing so well at the moment. She caught a sickness bug about 2 weeks ago and it has really knocked her back. We were in hospital for a few days and she is allowed home on confinement. She isn’t eating at all and drinking only what she needs, in order to stay out of hospital. The hospital thinks that her aspirin is beginning to irritate her stomach and have put her on omeprazole to help it. So she is very poorly at the moment and is confined to her bed and also the sofa for a couple of hours a day where she spends most of her time watching high school musical (her new favourite thing ever) or sleeping.

Update 1st October 2006

A special mention goes to Hayley this month, who even with her studies, writes to Chloe every week without fail and Chloe loves her letters.

Update 29th July 2006

We are going on holiday on August 5th, first holiday in 3 years, Chloe is finally well enough to go and we are so excited!

Update 18th June 2006

Chloe had an excellent birthday! She got a Furby baby, The Bratz Rock Angels Cruiser, more bratz dolls than my fingers could handle opening, lots of glittery stuff and money which she spent in the local toy shop with scary speed on a Furby Mummy, a Tamagotchi, a Bratz bop it game, a golfing set and a skipping rope. Thanks to the post pals people who sent some lovely cards.

The day after that was her cardiac check up and after her scary blue incident a few days before i wasn’t expecting good news, but luckily, all looks good. The flow in the heart is good and there are no blockages in the Pulmonary Arteries, which means the new anticoagulation therapy is proving effective. She has gained 3lbs in 6 months and they put her medication up accordingly, but the best bit of all was that her sats were at 96% (the highest ever without oxygen) Her next appointment is in another 6 months time.

She has just discovered the TV show Drake and Josh and it’s her new favourite show and Jesse McCartney is her new favourite singer.

Update 6th June 2006

Chloe woke up in the night and vomited all over me. She was breathless and hot, so I put her fan on in her room and slept in with her to monitor her breathing. When she woke up this morning she resembled a bottle of blue WKD so i checked her sats and BP. Her sats were a paltry 24% hence why she was so god damn blue and her BP was a little low but that was expected with her sats so low. Not to bother, I’m used to this! So out came her little oxygen tank, i made a call to the Hospital, who told me to give 2 hours on 100% oxygen then the rest of the day at 50% oxygen until her sats were at her normal 80% The people in the oxygen department brought me another 2 little tanks (they are little so Chloe can move about with them) She had her 2 hours on 100% and the blueness subsided enough for her not to look like a smurf!

Its Chloe’s birthday tomorrow, she will be seven. Seven i ask you!!! Who’d have thought it? Two years ago in august her doctors said to me, Carol, its time, she is slipping away, we think we should let her go peacefully, she has suffered so much. I agreed, and we sat and we waited and… she got better! Doctors ate their hats, nurses rejoiced and Chloe wondered what the fuss was about.

I think that’s the first time that’s happened to us, nooooooooooooo actually that’s about the 4th time since she was born! Got to admit though, that time was the hardest. And now 2 years on, she is 7, and doing pretty damn well if i say so myself. We shall have a good day, I’m so so so proud of her!

Update 31st May 2006

Chloe has a cardiac check up next Thursday, and it’s her birthday next Wednesday. I shall update you all to let you know how they went soon.

Update 28th April 2006

Chloe was chosen as her schools May Queen, and was crowned today. The other children did dances and entertained her. They did maypole dancing, which was amazing to watch. It was very sweet to watch the royal procession, with Chloe escorted by Robin Hood, also known as Brendon.

Update 13th March 2006

Chloe is laid up with the Flu, it always knocks her hard, and we usually end up in hospital at some point. She has her flu jab, so the strain is a lot less than it would be, but she doesn’t have the immunity to fight the bug, so she is confined to bed, and probably will be for at least a week. We are trying non hospital admittance this time. I’m being very strict on fluids, not so much food though, who wants to eat when you’re ill?

I had just started decorating her room for her – it’s typical! I’ve moved her into my room for the time being though so I can get it done.

Update 3rd March 2006

She is losing weight, dropped from 21kg to 19kg again in about 3 weeks, so her calories have been upped and she has to start having the powder in her juice again. They are saying if she carry’s on dropping, it’s the tube again.

The school is being great and the kitchen are giving her extra cheese and crackers and doing full fat versions of the food, which is such a load off my mind with all this health kick in schools, which obviously is really good, but there are some exceptions and Chloe is one of them.

Update 11th February 2006

This week Chloe made the front page of the local paper, to promote CHD week and post pals.

Update 27th January 2006

Just wanted to say a  huge thank you to all who sent cards and presents to Chloe in December and over Christmas, i’m trying to get round to emailing everyone a thank you letter from Chloe, but there are so many people! Chloe was over the moon with everything she got, and I have been truly stunned by people’s generosity.

Update 15th December 2005

Chloe had a cardiac check up today, and for the first time ever it was all good.

Her heart functions are stable, there is zero fluid in either chest cavity (yup I said ZERO yaaaay) and her sats were at an all time high of 90% and she has gone from 19 kilos to 21 kilos in a year, not much, but for her it’s up and that’s amazing.

They plan on upping her medications on her next visit, which will be in a record 6 months time!!! Never had an appointment so far away before.

They think she needs to see the respiratory doctor again for her asthma, to discuss the possibility of steroid inhalers now, as the salbutomol and budesonide isn’t enough to stop an attack from starting, if that makes sense. The only drawback with steroids is that it brings a possibility of heart failure in cardiac kids if over used, but we shall cross that when we come to it. For the moment I’m revelling in the happy.