Fontan cancelled

Just had a phone call from Mr Brawns secretary, they have had to cancel Josh's op. Have to phone on Friday for a new date.


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My beautiful children

We are so lucky to have fantastic children, love them both so much and so proud of them.


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First school photo.

I love this photo, just gorgeous. I am so proud if my little man.xxx



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Meeting with Surgeon.

Yesterday we went to meet Tim Jones a cardiothoracic surgeon, a really lovely man who explained all about the Fontan Operation.Basically they are going to redirect venous blood from the lower body (through the inferior vena cava) away from the right atrium to the pulmonary artery. there should not be any mixing of oxygenated or deoxygenated blood in the right ventricle.the right ventricle performs the traditional job of the left,supplying the body with oxygenated blood, while the passive systemic venous pressure performs the traditional job of the right, passing deoxygenated blood to the lungs. The surgery should be around 4 hours but have been told not to expect to see him for at least 6. I think it will be the longest 6 hours ever!

he also explained about the complications afterwards with drainage issue and pleural effusions (fluid build up around the lungs) which can mean he may drain longer but after 2 weeks it's routine to do another cardiac catheter to measure the fliud and to make sure the new shunt and fenestration is ok, there is also a chance chylothrax, if there is any chyle leak found he will be on a fat free diet for 6 weeks.

There are plus sides to, i should finally have a Pink little boy who should have much more energy, not be so breathless, better appetite. however this operation is not a cure but is palliative like all the others and we will still never take him for granted.

Unfortunately we haven't got long till he goes in, its a little over 2 weeks(01/12/10), not much time to prepare! but then i don't think I will ever be prepared to hand my son over to the surgical team, it's the hardest thing to do as a Mum (i'm sat here with tears in my eyes). Its a horrid feeling,something you cant describe so much uncertainty. seeing your little one in so much pain and not being able to make any decisions, everything is taken out of your hands, all you can do is hold there's, not being able to give them the cuddle you so much want to because of the lines, tubes, pacing wires and the stenotomy also knowing this is the last operation they can do
apart from transplant.So much to take in and get sorted in very little time.
We may be in for christmas we have been told to prepare for a 4 week stay could be less ( i really hope so!!)or could be 12 weeks or more,but as long as Josh comes out of the operation i don't mind! it will be the best christmas present i could ever wish for.

Well it's time to try and get some sleep, not much of that happening at the moment as you can imagine.least we have Disneyland to enjoy so will post when we come back with pictures.xx

Mega Update.

Where to start! So much has happened over the last few months, Megan's first communion was lovely and we all had a wonderful day, she looked stunning and we are all very proud of her.

Joshua has a few Cardiac appointments since June. We went to see Dr Dhillon on the 5th October, he is stable however his oxygen saturations are starting to dwindle and so are his energy levels, his heart function is good and they have also found Aortic stenosis and a few other minor problems! So Going to Conference on the 3rd November and should be on the list for Fontan completion EEK!!!

We had a wonderful summer holiday despite the weather, we had 2 weeks down in Sennan Cove.Visited Lands End which was just stunning.will post pictures!

Joshua has started school since then and yes i am very lost without him, miss them both so much when there at school and 3o'clock cant come quick enough. he had a wonderful 5th birthday party with his best friend Alfie. The magician was great and all the kids seemed to have a wonderful time. He was a very lucky boy and got lots of wonderful presents.

We have been out again in the caravan this time with Grandma and Papa and what a laugh we had! Ate lots laughed alot and played lots of silly games.

Had the dreaded phone call from Mr Brawns secretary (Joshua's cardiac surgeon)on Monday, what a shock! Josh went on the list last Wednesday for his Fontan, we were asked if we could go in on Monday and have op on Tuesday, obviously i said no, not enough notice! plus we go to Disneyland Paris in 2 weeks!
He is however on list for end of December so yes we are going to see in the New Year at BCH!
We are all feeling the stress and strain of the dreaded surgery but then I can't wait to see my little boy PINK!!! and to be bale to see him run around with his friends will just be amazing and worth it all!.
Megan however is struggling with the whole hospital thing and is worried he won't come home, what do you say to an 8 year, i can't lie and have always been as truthful as possible with her.The schools have both been a great support to us all especially Meg, she is such a bright,caring beautifully natured little girl it's worrying to see her so upset.It breaks my heart as a mum not to be able to promise her that everything will be ok as im not sure myself, we can only pray and hope he will strong enough to get through this op (im sure he will as he's on hell of a little fighter!)Joshua is the one who does not seem to bothered about the fourth coming surgery and still enjoying life to the full and would not have it any other way.
We are going to see Mr Brawn on friday (12th November) to discuss the fontan.
Will post whats been discussed over the weekend.

We are going to mass tomorrow as my little man is doing the offertory, will try and hold back the tears(im an emotional wreck at the moment!!)
Thats all for now.x