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.

Tuesday, 3 September 2013

Ethans Appointment

We are very lucky that we have access to a psychologist at the Freeman.  She works with Ethan to help with his issues that he has surrounding going into hospital, bloods etc.

Ethan's next Cardiac appointment is 19th September and we were told to expect further surgery after this one.  We shall see.  At the moment I feel like I am staring down the barrel of a gun.

As with all of us, we have up and down days.  Today is most definately a down day!

Stay healthy xxx


Sam & Ethan xx

Thursday, 18 July 2013

Hi Folks,

Its been a while since we have blogged but I promise we'll keep you updated more!.

Ethan is doing great in school, far better than we thought actually.   He is loving school and his friends.

Since we last blogged, Ethan has had numerous balloons & stents, as his pulmonary stenosis seemed particularly aggresive.

We are hoping that might last a couple of years until his Rastelli needs to be re-done, but we were advised that they would be looking to take him in after his next appointment and start the usual round of CT Scans etc.

He's been left with some left sided hypertrophy due to the stenosis that they dont think will get any better now.

Hes lovely, and coping very well.  He has physio every week for his legs and tries his best to keep up.


Friday, 24 February 2012

D-day for the Stents - Cardio Appointment!

Well, on echo the cardio is happy that the stent has not slipped. He is happy to leave him for a few months and see how it goes.

Which is good news!

I cannot help but worry, that he had all these things happening inside him with little or no symptoms that it was happening! Scary Stuff.

Anyway, if Ethan is happy, and the cardio is happy - who am I to argue!

Thank you as always for all your love and support xxx

Thursday, 16 February 2012

Cardiac Catheter 2012

Well, Ethan had his clinic appointment in January. It wasn't good news. He has significant Right Ventricle Hypertrophy and enlargement.

This is due to his heart trying to pump the blood through the stenotic pulmonary artery.

So they admitted him for a Cardiac Catheter on Valentines Day of all days!

He went down at 10.30am after a pre-med he was in a very good mood!

He was supposed to have been down a couple of hours, but at 2.30pm we were still waiting... nervously!

Dean overheard a conversation at the nurses station where they'd been asked to check for an urgent cross match 4 litres "for a patient bleeding out... patient name... Ethan" He went white.

The Doctor realised he had heard it and came then, and explained that he had lost a little blood and may need a transfusion. As it turned out he didn't.

We got to go see him up in recovery at 3.30pm. 5 (very long!)hours after we had put him on the table for them to knock him out.

Our cardiologist was very unhappy and has explained that the pressures in the right side of Ethan's heart are nearly double what they should be and that's why he has had the Hypertrophy and why they right side is enlarged.

They spent a long time trying to get into the pulmonary artery, the stenosis was very bad. Eventually when they got into it, they put a stent in.

Unfortunately, then, they couldn't get back into the artery to "consolidate" the stent - this involves blowing the balloon up in the artery to help the stent "stick" to the artery. This meant that the stent was wobbling around inside.

There was nothing that they could do about it, and we need to watch him in case the stent becomes loose and drops into his heart.

Anyway, the little they could do seems to have relieved some of the pressure in his heart. So we were sent away with an appointment to go back in a week to check the artery hadn't slipped.

Tuesday, 2 August 2011

Sorry We havent been around

Really sorry that we havent been around, alls ok, but life takes over! going to update today xxx lots of love and I hope your all well xxx

Monday, 21 June 2010


Sorry I haven't updated for a while, things kind of take over.

Since Ethan stopped his oral antibiotics he has had a bad chest and chesty cough - not bad enough for him to go in more than once but so he sounds like a 90 year old smoker.

We have our appointment with Dr Spencer on Thursday about his chest and possible asspiration so I'm hoping they give us some answers.

At Ethans first outpatients since coming home they wanted to do a detailed echo to check his new diagnosis of hypoplastic pulmonary artery. But in true Ethan style he wouldn't let them. So we have to go in for a sedated echo and also bloods to check for infection as he has had temperatures on and off since we got out of hospital - not huge temps though so not a major concern (just a niggle!).

In general, he is doing well he has been napping and not eating huge amounts. But he is miles better than before the operation so thats good! Here he is in full England supporter mode!

Saturday, 19 June 2010

High Calorie Foods

These are the high calorie shakes that Ethan gets on prescription - ask your dietician about Peadisure, or Calogen. You can also get additives to put in their drinks.

High calorie shakes

I found these high cal milk shakes in tesco extra thought you might like them . They do them in strawberry choc and banana x

Friday, 21 May 2010

A Lovely Day!

Ethans recovery is going well, we are waiting for an appointment for a sedated echo on the ward plus bloods to check he has no infection left over.

We had a lovely day at alnwick castle yesterday, where they filmed Harry Potter - just check out the pictures!

Thursday, 29 April 2010

Come in the doctor!

Ethan and josh have been playing doctors today. I must say mr potato head has been a very good patient! I on the other hand took some time out and went to see my friends at the craft house. They are such amazing friendly people. I can see why the studio is always full! X x