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.

Wednesday, 11 November 2009

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

Sunday, 8 November 2009

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.