It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

Saturday, 27 February 2010

Respiritory Appointment - Check

It is slowly dawning on me the seriousness of Ethans operation. He has had Open heart surgery before - but this is major. Ethan's heart twin Alexa has just had her rastelli, and viewing her blog opened the floodgates. Im so frightened its untrue.

Please send your prayers to Alexa (

We have had the appointment with the respiritory specialist. He thinks that Ethan is aspirating food/liquid into his lungs when he swallows and this is the cause of the constant bad chests. They took an xray and it showed no pnemonia which is good. And they took some secretions to grow and see what antibiotics he needs.

They are talking about admitting him for 5 days IV antibiotics immediately before surgery.

So now, we are just waiting for the call - is it wrong that I dont want them to ring? they said the ward has been closed to scheduled surgery as they have had so many emergancies and transplants. But did say sometime in March. How scary is it that there are more and more of us everyday? people starting their chd journey, their lives turned upside down. I really feel for them.

Sending love to everyone and praying for those we know are in hospital - alexa and zeb xx love Sam x

Saturday, 13 February 2010

Waiting.... Feb 2010

Just a quick post to wish everyone a Happy Valentines Day! this month is CHD awareness month so we have been working hard trying to raise awareness.

I have been making cards to sell at work - have a look at the Valentines ones.

I found some great stamps that say Happy Hearts Day so I am planning on making some specialist cards for all the chd kids when they celebrate their heart day. If you want one let me know!!

We are still waiting for Ethans appointment with the respiritory specialist ahead of his operation.

Here is another picture from when we went bowling last week.

Happy Valentines !! xxx Sam & boys

Wednesday, 3 February 2010

Rastelli vs Nikaidoh

Have been to see Mr Hasan this morning regarding his op. He said they hope to do the rastelli but it could depend upon a few things and until they open him op:( they wont know - but they will either do that or the nikaidoh. They did an echo to check him over.

They are also doing it now before he starts school as apparantly they are starting to do them sooner so he can get a good few years in school b4 his next op. We are looking at 2-3 more operations after this to get him to his 20's after that they dont know as they dont have any figures for people beyond 30-40 year old. But the likelyhood is that he will need more to correct leaks etc.

Its an all day operation and he has done 10 rastelli's in his career - he said it is a very rare op. but that all patients that have had the op are still with us!

there is a 10-15% risk - (a moderate risk he said) and 4-5 days ICU and 10-15 days on the ward.

Thats a hell of alot longer than i thought it was:confused: We need to see Dr Spencer (the respiritory doc that discharged us) to get his chest sorted as he is really wheezy.

He took my mobile number and I have to wait for a phone call. So now Im waiting and I think its starting to sink in.... x