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

Surgeons Appointment

Finally!! we have been given a date for the appointment with Mr Hasan - Ethans heart surgeon - it is on 3rd Feb to discuss his surgery. Keep everything crossed!!x they say they have to do the surgery by April so not long now!

On a positive note, Ethan finally figured out how to say his name properly rather than saying Yi Yi - god knows where that came from!!

I also thought it was about time to show you a recent picture of Ethan! that and the fact that I realised the little picture icon allows you to upload them haha

Take care of yourselves xxx

Poem; My Life Yet To Come by David Moore - Fellow Heart Parent

My days were numbered from the very start

I fought for every breath due to my heart

My PDA closing I started to gasp

Just trying to breathe became such a task

The medicines they worked for a couple of days

But my heart still beating like I was running a race

It was beating so fast it was wearing me out

My heart was failing there was not doubt

My parents were worried, distressed, and confused

The tears now flowing due to the news

Tomorrows the day I go under the knife

I'm not even two weeks and fighting for my life

My lactic's were climbing and my function so poor

I had not the energy to play on the floor

I'm feeling so weak I just want to sleep

Something my mom is watching is starting to beep

I can hear them talking but just don't understand

I am still comforted by the warmth of her hand

The tone in her voice as she started to speak

Something about Jesus and my soul to keep

I have my eyes closed but I still see a light

I'm am very little but I know something's not right

I hear my mom cry as I took my last breath

But I am to young fear this thing they call death

The first thing I saw when I reached towards the glow

Was the figure of a man that for some reason, I know

He wrapped me in his arms and I felt so safe

I reached up to him and I touched his warm face

He spoke so softly and as not to startle me so

He told me he loved me and was letting me go

He told me a story of my life yet to come

That one day my living would be witness to some

I don't know why and I still can't explain

But I opened my eyes when I felt a sharp pain

I took a deep breath and I started to cry

I looked up to see mom with a tear in her eye

Still hooked to wires and lying in bed

For some reason I'm stronger and wanting to be fed

My parents don't know it but I saw God that day

He gave me more time to frolic and play

God has his reasons that some live and some die

What some parents have to endure leaves a question. Why?

I know it's not fair but I don't question the choice

I am a witness for him and I still have a voice

My heart isn't normal but it's perfect you see

Because without it there's no story, no poem about me

I'm one of Gods miracles a testament to his grace

I was only a week old but I got to touch his face.

Happy Christmas & New Year!

It was eventful (it wouldn't be Ethan if it wasn't!) We had our lunch at the Brown Horse at Tow Law (Durham - it was divine!) and we were stopping over.

On Tuesday I took Ethan to the gp as the last well over 4 weeks we have noticed his breathing is very quick - over 40resps he is working harder eg his shoulders are moving up and down alot and his tug is worsened. He heart seems to be doing 10 to the dozen He saw dr leonard for a check a couple of weeks ago and she said his chest was clear although noted his resps etc were up.

He has had constant temperatures which we are attempting to keep down with calpol, a cough, runny nose (gp said fruity cough and rattly chest lol) but his chest is clear?... he is grey and sometimes navy. He is now off his food and intermittant diorhea. Generally he is up and down, knackered one min perked up the next.

That morning, he had no energy, we were holding his head up etc... he refused breakfast, but had a little dry cereal in the end - then perked up by 10am! He has given us some amoxicilin to start if he gets any worse

I think its probably as he had his s.flu jab on 13/11/09 he was alright for a week or so then started with all this.

SOooooooooo, he had been GREAT on Christmas day, eaten loads absolutely fine no problems at all - no reason to be concerned anyway. Ethan was sleeping and we were in our room, when he started grunting in his cot. I picked him up and he was navy started being really jerky but rigid legs etc... floppy not happy at all. So I rung 999. It took an age for them to arrive - but we were in the middle of nowhere and it was snowing ALOT!

Ambulance drive from tow law took half an hour and was awful in the snow and think we knew more than they did they looked very young! he wouldnt let them touch him was histerical...coughing up frothy stuff, but at least he was responsive! Within half an hour of being in and having a little 02 he was ten times better... very very strange.

We are home we came out at 1am as he was much better didnt see the point in stopping in and wouldnt have got any sleep. They can see changes in his lungs and a small amount of consilidation but dont think its pnemonia, gave us some AB's . Didnt sleep as typically, as soon as he was asleep in his cot again - he started grunting?! so pulled him in with us where he was more upright and he seemed more settled.

Drive back to Tow Law very hairy in bleaching snow... I hope we aren't in for a replay tonight though as he is still poorly and we had to ring for another weeks antibiotics.

SO I just wanted to wish everyone a very Merry Christmas and all the health and happiness for the New Year - lets hope this year is a good one.

Oh and btw we are still waiting to see the surgeon about his next surgery but should get a date soon xxx love to everyone x

Catheter 10/11/09

Thank you for thinking of us xxx We are home today and tbh feel very frustrated. He went down for catheter we left him on the table:( at 11 and he didnt come out until 2! not back on the ward until 3 I think they were having a few problems waking him up - said he could sleep for england!

He came down onto the ward with no o2 which was good. They did the cath an endoscopy and angiogram.

Cardiologist came back down and said everything was as expected. Nothing critical and asked how quick would I like the operation for him? I said tomorrow because of the way he is. He said we are looking likely in the new yearbrickwall surely its unfair to leave him the way he is?? puffy tired etc.

The trouble is, he is too little to do the rastelli and they would like him to gain weight - but he has gained 0.05 kilo in two weeks! I asked about putting another shunt in as I was told previously that was what they were going to do. And he said well i suppose you could put another very small shunt in...

so we just have to wait.

Didnt get much sleep last night as his monitor kept going off his heart rate dropping to 71 and sats sitting at 72 ish... but no the nurses never bothered. So im wondering if 71 is a normal sleeping heartrate?

On the other hand I am feeling very lucky as there were two little boys in hospital awaiting transplant. One of which was very very went on the berlin heart yesterday so I am thinking and praying for them both that they have the strength to wait xxx

Cardiac Catheter

Tomorrow we go into the Freeman Hospital at 3pm for Ethans Cardiac Catheter on Tuesday.

The catheter will check his plumbing so to speak and then they will decide what surgical route to take next.

Fingers crossed that they have a bed for us.... Im so nervous I could be sick.

Still waiting!

We were told Ethan needs to have a cardiac catheter for them to check whats happening inside his heart. We are still waiting for the appointment to come through - no suprise there then!!

We should have had the date last week but nothings arrived as yet...