Emily R

06 December 2015

Story Written 2015

Emily was born with half a heart (Hypoplastic Left Heart Syndrome) and had three open heart surgeries before she was 3; this led to anxiety and difficulty sleeping. She also developed small motor tic disorder causing her to grimace and click her fingers.

Emily is incredibly brave and faces life head-on. She is also funny and self-deprecating but is often isolated as she cannot live life as other teens do.

In addition to HLHS, Emily has short stature and is around the size of a 9 year old.

Over the past 10 years, Emily has developed a serious leak on her heart valve which has been closely monitored during her many hospital visits. This past year, the leak has become critical and she has been hospitalised to have her heart restarted three times. She is now in heart failure and will have open heart surgery on December 5th: she is expected to be in hospital for 8 weeks or more. At present HLHS does not have a cure.

Update 30th December 2016

Emily has been fairly well for the last couple of months. She had a pacemaker appointment early December, before Christmas at London. Unfortunately, we had the news nobody expected or wanted – Emily’s pacemaker has started to fail, just as it did last time, but more rapidly. We have another appointment at the end of January,firstly to see if there has been any change (good or bad) and secondly start to form a plan. Currently the pacemaker’s life has got 2 years max, but as we know from last time 2 years can turn into 7 months very quickly, depending on the threshold of Emily’s pacemaker. It seems that this time there is nothing wrong with the lead, but in fact something wrong with Emily’s heart, making things more difficult as we move on.
Emily is a worrier and is worried about what is happening ,but also she is worried about the work she is missing at school. She is now in her initial GCSE year (10), so her work is more important than it used to be.
We would like to say a massive thank you to everyone who has sent post to Emily recently. Emily does try to send replies to everyone who has an address as often as possible. She has been given some amazing things and she said some of her “collections” are growing!!
Emily, Paul and I wish everyone a great start to 2017 xx

Update 23rd October 2016

Em had a chest drain late last night and it’s drained loads of blood from her lung tissue and chest cavity. She was sedated and on a ventilator all night, but is now coming around and breathing by herself, this is really great progress.

Update 23rd October 2016

Em suffered a major internal bleed that led to a sudden and extremely scary rush to intensive care. She turned white, non responsive, her left lung filled up and then collapsed as her chest flooded. Emergency care gave fluids and 3 bags of blood. She is now sedated in ICU as they run tests and drain the fluids off. Her cardiac registrar said it was ‘very hairy’ for a while.

Update 23rd October 2016

Emily was admitted for emergency surgery after problems with her pace maker. They had to open her chest to replace it and she has since had a collapsed lung. She is awake and in a lot of pain.

Update 9th July 2016

Lots of trips back and forwards to Evelina Children’s Hospital this month. Emily’s pacemaker will have to be replaced within the next eight months, so this is causing her a lot of worry.

She was due to go on her first senior school trip to Naples later in the year, but sadly she has been refused a ‘fit to fly’ from her doctors, so is terribly disappointed.

Over the moon that the school year has come to an end though and brought home another brilliant school report. Total superstar!

Update 2nd June 2016

Not great news this month. Emily has had to go down to Evelina a few times as her heart rate has dropped. Her pacemaker is not working at all well ¬†as previously thought, will only be viable for up to eleven months. At the moment Emily’s specialists are deciding what they should do. This is going to take a while as Em has a unique set up with having only half a heart.

It’s a very worrying time for us all, as we wait to see if there is a possibility that she doesn’t have to have another major heart surgery this year. This is looking increasingly unlikely.

Emily is as always, her usual happy self. Trying to get on with her school work as she begins her GCSE years.

Update 6th May 2016

Emily has had a few minor problems this month. She had started to feel dizzy so we had to go into Evelina children’s hospital for some tests. The doctors have altered her drugs slightly in the hope this clears up, but this has led to her Warfarin levels dropping below the right level.

Her heart rate has slightly improved, but still couldn’t function without her pacemaker.

She is in her usual good spirits and is very grateful to everyone who takes the time to think of her.

Update 3rd April 2016

Not great news for Emily again this month. Her pacemaker is not working properly and will need to be replaced, which means another open chest surgery and time in hospital. It’s especially bad news for Em as her scar had healed well and we felt the worst was behind us.

Thank you to everyone who has thought about Emily this month. She is not able to write back to thank everyone, as she is back in school full time. She is trying to catch up with the work she missed while she was absent, and be ready to start her GCSEs in the new term.

Update 4th March 2016

Emily has had quite a good month this month. Thank you again to everyone who thinks of her. Bloods are still needing to be tested weekly, but INR levels are starting to even out and her scar is healing. She’s felt a little bit down recently as her school are strictly limiting the activities she takes part in, and she likes to try to live life as much as she can.
She’s recently taken up baking and really enjoys thinking up new recipes.

Update 5th February 2016

Emily was rushed back to hospital at the beginning of the month when her newly fitted pacemaker was having problems. After a few days at Evalina she came back home.

Now on Warfarin, she is having weekly blood test as we try to get her levels to stabilise. These are always painful because her veins often collapse.

Emily has received some lovely cards and gifts this month. Thank you so much to everyone who takes the time to think of her. It makes such a huge impact on her life.

Update 21st January 2016

Emily was rushed by ambulance back into Evelina and spent the second week of January back in hospital. Her pacemaker had been set at the wrong level and her heartbeat had dropped to 40 beats per minute. She was struggling for breath, but we assumed it was part of the recovery process, until she started to turn grey. Who knew a pacemaker could be set at the wrong level?!

Emily’s also struggled with her Warfarin levels, and is having to go to our local hospital every few days to have bloods taken. This is always traumatic, as most of her veins have collapsed.

At home until March, the post she receives is a real brightener. She’s been using the scrap booking gifts to make cards for other Pals, and also sent her own gift box to another Pal last week.

She is, as always, upbeat and has started to have schoolwork sent through, so she doesn’t get too far behind.

Thank you to everyone who thinks about Emily. Post Pals has been the best therapy!!

Update 31st December 2015

Unfortunately Emily’s operation to repair her heart valve was not possible. The surgeons fitted a new valve and a pacemaker. She will need to take Warfarin and at some point will require more open heart surgery.

She has left hospital and is now at home recovering for the next six to eight weeks, before returning to school.

We’d like to thank everyone at Post Pals and all the senders for making Emily’s time in hospital so much easier. The response was unbelievable. We think she received over 100 cards and letters and lots of parcels too.

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Rocco S

01 December 2015

Story Written 2015

Rocco is 5 years old and has spent most of his life in hospital. He has been fed by TPN (total parental nutrition) since he was 9 months old. He is very complex and has intestine failure with no immunity, as well as this he has bone marrow dysplasia, hypopituitarism, hypothyroidism and hypoglycaemia.

In August 2014 Rocco had a multivisceral transplant (liver, intestine and pancreas). Unfortunately he has been in and out of hospital since due to multiple complications, which have resulted in PICU stays, and he is currently in HDU.

Despite all this Rocco is a smiley little boy who loves spending time with his sister Olivia and playing on his iPad.

Update 19th January 2016

Sadly Rocco passed away peacefully with his Mum by his side.

Please keep sending cheerful post to his sister Olivia.

Update 11th January 2016
Rocco really enjoyed the post he was sent. Sadly on Christmas Eve Rocco deteriorated and had to be moved back to intensive care. His family have since saved his post as he hasn’t woken up. Olivia is finding the post she has been sent helpful at such a difficult time for the whole family

 

 

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