Spoke to BCH and still no beds available, we have a new date yippee!! Josh will be admitted on Thursday 20th January and will have op on the 21st eek..
The last few weeks have been just awful. not knowing if and when we may get the call, constantly checking phone just in case! Least we have a few more weeks at home unless a bed becomes available and there are no more emergencies.
Its going to be a busy few weeks with Christmas and birthday parties before we know it Josh will be in.So many people have said"least you have Christmas" and it is lovely to be home for Christmas but it doesn't take the anxiety,stress that horrid feeling of handing your child over to the surgical team and not being in control and having no real say what's best for your child.I am dreading that fact of not really being able to put my arms around him and making things better with a special mummy cuddle or Huggle as Josh calls it! its frightening going into unknown again but I keep thinking of all the positives, seeing my baby pink, being able to run with his friends, climb stairs without being puffed! Hopefully have bigger appetite.Just want this to be over in so many ways but so bloody scared its unreal.
I feel so tired because I haven't slept properly for weeks.On a positive note we have booked a holiday to Turkey with our friends Gemma and Ade (Alfie's Mum and Dad)so looking forward to it, so back on the weight watchers hopefully lose another 12lb or a little more!!
Josh had his first school nativity the other week. it was wonderful and how I never cried I will never now.He played a chicken!!he had marigolds on his feet LOL.. I couldn't believe how little he was but still very adorable, cute, gorgeous i could go on but then he is my beautiful son.
Have a wonderful Christmas everyone.xxx
Wednesday, 15 December 2010
Wednesday, 1 December 2010
Disneyland Paris
Where to start!!
When we arrived at the hotel they upgraded us to vip (very nice!!) we were told we need to go to Warner studio on Wednesday at 3pm all very secretive!
The room was lovely, the kids both had mickey mouses on the bed, dressing gowns and slippers, didn't get that last time!!
So Wednesday came poor Megan and Me both had D&V, thankfully mine only lasted a few hours but poor Meg was up most night and looked pretty poorly, but one thing i will say is she carried on enjoying the day. what a day it was, we saw the stitch live show first which was brilliant and then we went to see what the surprise was, wow we had a special meet and greet with the characters and got into the rides without queuing which was great.
Friday was magical, Josh's best friend Alfie came with his mum,dad and brother it was wonderful and the look on the two boys faces was worth every penny.We had a wonderful time with them all and would love to do it again. It makes us realise just what good friends we have.
When we arrived at the hotel they upgraded us to vip (very nice!!) we were told we need to go to Warner studio on Wednesday at 3pm all very secretive!
The room was lovely, the kids both had mickey mouses on the bed, dressing gowns and slippers, didn't get that last time!!
So Wednesday came poor Megan and Me both had D&V, thankfully mine only lasted a few hours but poor Meg was up most night and looked pretty poorly, but one thing i will say is she carried on enjoying the day. what a day it was, we saw the stitch live show first which was brilliant and then we went to see what the surprise was, wow we had a special meet and greet with the characters and got into the rides without queuing which was great.
Friday was magical, Josh's best friend Alfie came with his mum,dad and brother it was wonderful and the look on the two boys faces was worth every penny.We had a wonderful time with them all and would love to do it again. It makes us realise just what good friends we have.
Monday, 29 November 2010
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.
- Sent from iPhone.
- Sent from iPhone.
Monday, 15 November 2010
My beautiful children
We are so lucky to have fantastic children, love them both so much and so proud of them.
- Sent from iPhone.
- Sent from iPhone.
First school photo.
I love this photo, just gorgeous. I am so proud if my little man.xxx
- Sent from iPhone.
- Sent from iPhone.
Saturday, 13 November 2010
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
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
Wednesday, 10 November 2010
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
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
Thursday, 3 June 2010
It's only a week away from Megan's first holy communion and Joshua outpatient appointment at Bch.Really not looking forward to this appointment as the decision will be made if he is going to conference for fontan! So feel really nervous and anxious at the minute.
Well after 2 years of waiting we finally have a roof over our front door and I will say it looks lovely, well done Danny.
We decided to go away in the caravan for a few days and wow we have been so lucky,the sun is shining and we are all really relaxed, just what we needed.
When we go back we have a busy few months with meetings and stuff as my little man starts school in September, can't believe how quick the time has gone. I think I will be lost without him!
Will write and post pictures of our stay later.x
- Sent from iPhone.
Well after 2 years of waiting we finally have a roof over our front door and I will say it looks lovely, well done Danny.
We decided to go away in the caravan for a few days and wow we have been so lucky,the sun is shining and we are all really relaxed, just what we needed.
When we go back we have a busy few months with meetings and stuff as my little man starts school in September, can't believe how quick the time has gone. I think I will be lost without him!
Will write and post pictures of our stay later.x
- Sent from iPhone.
Wednesday, 31 March 2010
Mega Update.
Sorry haven't updated lately!
Well lets start with Joshua's 4th birthday, he had a great day and loved his lazytown party. He got some lovely presents and didn't want the day to end bless him!
Then came Christmas wow!It was so magical with him this year, he really got into the whole father Christmas thing! he was so excited he went straight to sleep and mummy being mummy had to wake them up at 7 am(whose the kid really!!). We spent the rest of Christmas day with his grandma and papa which he really enjoyed.
2nd February we wnt to see Dr Dhillon at Birmingham Children's , the appointment didn't go as well as we wanted, they found he had a really harsh murmur and now looking at doing his fontan Christmas this year(I don't think so!)He has another appointment June this year(wow that's a busy month!) so we will see what happens then. They stopped his Captoprill for 2 weeks due to his constant bad cough but then he had to go back on it as he needed it.Otherwise his function is good, he has no regurgitation and sats of 86%(Brilliant).
Josh started swimming lessons in February as well and he loves it and yes he does it with his best friend Alfie!
Lets talk about his friendship with the little man himself! it is so cute, they really do have a special bond and they have found a friendship that normally takes years to build. They always ask for each other, get upset when one of them is not at nursery. Josh always talks about "my best friend Alfie" and did actually say the other day " mummy when i go into hospital, i'm going to really miss Alfie" .
We have been away in the caravan already this year and can't wait to go again next Tuesday, there so much freedom and no stress, we are going with our very special friends Jules and Kev , that should be fun!!
We have a special heart friend Charlie who is in hospital now after having his fontan last Wednesday and wow he's being a little star, our thoughts and prayers are with all his family at this very stressful time.x
Well thats it for now will try my best to update on a weekly basis.xx
Well lets start with Joshua's 4th birthday, he had a great day and loved his lazytown party. He got some lovely presents and didn't want the day to end bless him!
Then came Christmas wow!It was so magical with him this year, he really got into the whole father Christmas thing! he was so excited he went straight to sleep and mummy being mummy had to wake them up at 7 am(whose the kid really!!). We spent the rest of Christmas day with his grandma and papa which he really enjoyed.
2nd February we wnt to see Dr Dhillon at Birmingham Children's , the appointment didn't go as well as we wanted, they found he had a really harsh murmur and now looking at doing his fontan Christmas this year(I don't think so!)He has another appointment June this year(wow that's a busy month!) so we will see what happens then. They stopped his Captoprill for 2 weeks due to his constant bad cough but then he had to go back on it as he needed it.Otherwise his function is good, he has no regurgitation and sats of 86%(Brilliant).
Josh started swimming lessons in February as well and he loves it and yes he does it with his best friend Alfie!
Lets talk about his friendship with the little man himself! it is so cute, they really do have a special bond and they have found a friendship that normally takes years to build. They always ask for each other, get upset when one of them is not at nursery. Josh always talks about "my best friend Alfie" and did actually say the other day " mummy when i go into hospital, i'm going to really miss Alfie" .
We have been away in the caravan already this year and can't wait to go again next Tuesday, there so much freedom and no stress, we are going with our very special friends Jules and Kev , that should be fun!!
We have a special heart friend Charlie who is in hospital now after having his fontan last Wednesday and wow he's being a little star, our thoughts and prayers are with all his family at this very stressful time.x
Well thats it for now will try my best to update on a weekly basis.xx
Tuesday, 30 March 2010
Sunday, 28 March 2010
Saturday, 27 March 2010
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