Last week's very bad news

A lot of mainly bad stuff has happened since my last blog.

We've been in GOSH for the last nine nights and Barnet hospital for a night before that.

Most of you will already know but Shani's heart has weakened again since last month and the doctors don't know how to stop it from weakening even further - in fact they don't think that she'll last for a lot longer.

Dr D told us this last Thursday after a committee of top consultants and surgeons at GOSH had discussed Little S that morning. They concluded that it was unlikely that they could determine the cause of the heart failure (although they would try), let alone fix it, and that neither a heart nor a heart-lung transplant were viable due to the complicated structure of Little S's arteries - they wouldn't be able to connect everything up properly.

On hearing this J and I were knocked for six - we were unable to do anything apart from cry and stare blankly for the next hour or so. Suddenly we were told that our gorgeous girl who has been, miraculously, fighting to stay alive for the last two years was not going to make it. 

When? We don't know.

Unless either she pulls off another miracle and manages to find a way to stop her heart failure and get things back to how they were a month ago, or someone else in the world has a way to save her that has eluded both GOSH and the Evelina hospital (we got a second opinion from there from Dr E who agrees, reluctantly, with GOSH).

Unlikely maybe, but we don't stop hoping and praying whilst there is still a possibility.

Never give up - that's what my rabbi told me today.

So we'll be here at least until the middle of next week (they think we will be able to go home by then but that won't change the bleak outlook for the longer term) which means a second Shabbat is looming.

Keep us in your thoughts and prayers  - the incredible love of so many of our friends and family, and people that we don't even know, is what has been keeping us going.

Shabbat Shalom.

Chanukah and miracles

This week was Chanukah, a time to remember miracles and to practice hope and faith.

In the Chanukah song mo'atzur, there is a verse that describes the Chanukah story, and this year I noticed that it includes the line Na'aseh Nes HaShoshanim.

This is usually translated as something like 'who made miracles for the roses' or 'for the beloved' but which could also be rendered simply as 'who made miracles for Shoshanas'.

So this Chanukah we're not just thinking about the miracles of military victory and spiritual light but also of our wonderful miracle girl Little S.

Chanukah Sameach to you all.

An uncertain future

Monday 3 December

Received a long awaited email from Dr D regarding the results from Little S’s angiogram.

Not happy.

We had hoped, and been led to believe, that the letter would let us know when GOSH thought that they would be scheduling Little S’s next major operation to give her a proper pulmonary valve and close the hole in her heart.

However, instead we found out that Little S’s pulmonary artery hasn’t grown as well as expected, both where it meets her heart and within the left side of her lung.

On top of this it appears that she also now has reduced ‘cardiac function on the left side’, presumably meaning that the left side of her heart is weaker than it used to be.

And because of these unexpected issues, the surgeons do not feel that they are able ‘to plan an operation at least for the time being’ …

So we're left with uncertainty and questions:

-          What happens to Little S if they don’t operate ‘for the time being’?

-          They’re going to monitor her instead, but to what end?

-          And most importantly, should we be worried about Little S’s immediate health?

Before Monday we had a plan (albeit with risks) to give Little S the best possible chance at a decent future.

But now, we don't.

And, as a result, it’s becoming easier to read ‘symptoms’ of Little S’s condition into her behaviour: she’s fairly sedentary, doesn’t climb stairs, breathes heavily.

So does this mean we lose hope?

No - we have to keep hoping and praying.

Praying that Little S’s miracle continues and that she chooses life.

Because we always will.

Hoshana Shoshanah

Chanukah Sameach