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Eden’s heart journey

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Eden’s heart journey

This is a page to keep family and friends up to date with Eden and her heart journey

02/09/2023

Desperate times calls for desperate measures for this young lady. She’s not coping at all with her NG tube and the sensory overwhelm is just too much for her. She hasnt made any progress in opening her mouth so with lots of meetings and discussions with professionals we have decided that she needs a gastrostomy. This coming Tuesday she is undergoing an operation to have her PEG fitted along with teeth being removed.

Not the best timing at all as it falls on the first day of the school year but hopefully she will be on her feet soon and then the real work will begin to get her to find her voice again and make small steps to eating orally.

This is huge for Darcey as she absolutely HATES hospitals! I’m also not sure I can deal with this admission so soon after Eden and her latest surgery but my positive pants will be worn and we will get her through this.

KBG syndrome sucks! But my girls are warriors!

16/08/2023

Now you see it - now you don’t!

Well done Eden! Such a super star! ❤️❤️❤️

07/05/2023

We managed to get Eden home yesterday in time for the coronation! Thankfully it’s just complications post surgery and fluid not disappearing, rather than the dreaded endocarditis that we were all worried about. With more painkillers and meds she will be just fine. A check next week and close monitoring for a while longer.

She could definitely do with brushing her hair but in true Eden style she continues to amazing.

Thanks again for all the support and kind messages! It definitely keeps us going when things look bleak!

04/05/2023

We ended up having a sleepover last night and are even lucky enough to stay again tonight and (maybe) even longer.

Waiting for blood cultures to grow to see where the infection is coming from and have found out that this annoying fluid still seems to be sitting around back of the heart and lungs. Frustratingly she can’t start any antibiotics until they know what to treat.

She continues to be amazing! I’m so very lucky!

03/05/2023

This girl just breaks me. It constantly feels like one step forward and ten back with both the girls.

Eden is okay - just struggling with these damn inflammation/infection markers in her bloods. Lots of scans, bloods and tests taken and home later.

I think it’s safe to say that no matter how much I want a straight forward and easy life with my girls I have to understand that having medically complex and special needs combined is an absolute nightmare to juggle.

I’m exhausted, tearful and my cup is completely overflowing. I will however wake up tomorrow and carry on with a smile on my face!

21/03/2023

Yesterday we were discharged! A few things they need to keep an eye on but we are now able to be at home to heal and mend.

She’s looking better and feeling better and I couldn’t be prouder of this superhero.

I just love her so much! ❤️

19/03/2023

I got my wish - we are home! My kitchen looks like a pharmacy and we are navigating how to tube feed two children who have two completely different feed plans and medications.

Edens playing barbies with her twin. House looks a mess but I’m so happy she’s got the energy to play for a bit.

We are back again tomorrow for more bloods as her inflammatory markers are still high and also an echo to check on the fluid around her heart. Darcey has appointments too so it will be a fun family day out.

Happy Mother’s Day to you all out there!

18/03/2023

We managed to escape but only for the night. We have to go back in this afternoon for more blood tests and wait to see how they look to see if we can get home for Mother’s day tomorrow. Infection markers are still high but on the positive side the urgent CT scan just showed a fluid build up and scar tissue. Phew! Eden has made a friend on the ward so it has been a huge boost in her mood over the last couple of days. It also helps as an incentive to go back in!

Mog the cat has not left her side again!! What a legend!

15/03/2023

Sporting a new pink hairstyle for our return back to the ward last night. Feeding and vomiting still are causing Eden set backs.

Just need a new feed plan and for Eden to tolerate it but maybe only a couple more sleepovers and then home again.

13/03/2023

Eating and drinking are still causing Eden a few set backs and I’m desperately trying not to panic that we maybe going down a similar route to Darcey but we were sent home this afternoon on day release in the hope that a change of environment and home comforts could help.

The fluid around her heart has decreased significantly so things are looking up!

So we are now snuggled in bed with the cat and we will just see what tomorrow brings. It’s just the nicest feeling in the world to be able to bring her home.

11/03/2023

Since my last post Eden hasn’t really made any improvement. The fluid is still building up around her heart and causing her a lot of pain and discomfort.

Doctors are desperately trying to get rid of they fluid by using diuretics as it’s a less invasive way but if this doesn’t work they may need to put drains back in. Hopefully discussions will happen again today.

It’s been really hard because all she screams is that she wants to go home. We did have a lovely distraction yesterday with Barney the Therapy dog. He spent ages with Eden and put a huge smile on her face.

I feel we are constantly taking steps backwards but hopefully we will turn a corner soon.

❤️‍🩹

08/03/2023

Well what a set back!

Poor Eden has struggled since Saturday with vomiting and not being able to eat or drink. Temperature has also been building. They have questioned her liver issues and tested for that and then wondered about possible withdrawal from the meds that she normally has. Turns out she has a big build up of fluid collecting behind her wound which unfortunately burst yesterday. She has been quite poorly today but back on antibiotics. Fingers crossed this kicks in soon. Also she had to have an NG Tube fitted just like her twin Darcey to be able to take some of the medications and feed.

You’d all be so proud of her. She’s been up on her feet and bossing everyone around but the infection has clearly got the better of her today. Lots of rest and sleep is just what she needs.

Closely monitored over night and tomorrow more scans and test results.

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