Monday, August 20, 2007

August 20, 2007

Well we've just got back from the hospital, and I'm really pleased to report that Charlie is STILL doing brilliantly. His oxygen saturations were 83-84, which is the same as last time, even a little bit better. This is amazing, because he's growing bigger by the day, so the bigger his body gets, the harder it should be for his heart to pump the oxygenated blood around... but it doesn't seem to be affecting him at all at the moment, and he is maintaining really well. He's growing like a trouper too, and is rocketing up throught the centile charts.
His ECG was fine, and his echo (an ultrasound scan of his heart) showed that his heart function is still great, and his valves are working well too.
We were really pleased to speak to two cardiac consultants - the one who looks after Charlie now, and the one who cared for and monitored Charlie before he was born. Both said Charlie looks great. We were particularly touched to be told that one of the doctors often uses Charlie as an example for other parents who have been given the crushing diagnosis of HLHS, to show them how life can be, and how well these children can do.
Another brilliant bit of news is that Charlie is doing so well, there really is no rush for the next stage of surgery. In fact, we were told that Charlie probably wouldn't be called for a pre-surgery cardiac catheter until some time next year, with the fontan to follow even later on.
In all honesty, we'd thought Charlie's catheter would probably be in the next month or two, so it really feels like a reprieve. Although it does depend on the medics at Birmingham, because it's their call really.
We were also delighted to be given some more news about HLHS in general. When we were given Charlie's diagnosis, we were told that there was a 50% chance of children with this condition reaching the age of five. Today we heard that the figure being quoted now is 80+%. The consultant also told us that many of the previously-untreatable conditions/side-effects associated with HLHS, such as protein-losing enteropathy, are now treatable and even curable. According to the doctor, the prognosis for people with HLHS is much less grim now, and everybody is much more positive and optimistic about a favourable long-term outcome.
In the past, we've always been told that people relying on their right ventricle to do all the work - either because the left is missing, like Charlie's, or because their 'plumbing' is faulty, leaving their left ventricle redundant - would, in all probability, need a transplant in their late teens or early adulthood, because it wasn't thought that the right ventricle could sustain itself for any length of time.
However we were given another amazing piece of news today by the consultant, who told us that there are people out there relying on JUST their right ventricle, who are now in their forties and still going strong.
Although they do not have exactly the same condition as Charlie, the end result is the same. We were blown away by this news. I don't think the consultant realised quite what he had given us in those few words.
Until now, we had never allowed ourselves to think beyond mid-twenties for Charlie. Of course we have hazy hopes and daydreams about him getting married, having kids, even having grandchildren, but not in any concrete terms.
To be told that there are people out there, now in their forties, and living a good life has bought us another two decades-worth of hoping. This is enormous for us - as long as we have hope for the future, we can do anything.
Charlie behaved brilliantly throughout the whole appointment - he lay so still for his ECG that they got all the results they needed in just one go, plus he was really quiet and well-behaved for his echo, and did everything the doctor asked of him. We've been given another appointment in six months.
We're so proud of Charlie, and so grateful that he's doing so well.


Lindsey said...

Well done Super Star Chas!!!!
I bet you all nearly skipped out of the hospital today. What great news about Chas and what great news about all the heart facts you found out too. It gives us all great hope.
I remember the lovely Mr Barron telling us that there are people with the same condition as Thomas who have the fontan circulation walking around in their 40's/50's. I never questioned him further as I was so stunned, and your news today confirms this further. Brilliant brilliant!
Love to you all
Lindsey x

The Life of a Paed Heart Transplant Recipient said...

Fabulous post, really pleased to read your good news. Well done young man!

Very interesting to read the statistics they are now quoting too.

All our love

Bev and Lucy xx

Wendy said...

I love these newer excellent statistics. It is beautiful to know of people in their 40's and 80's. What wonderful praise to hear your son's excellent progress is raising the hopes of other parents. I love your perspective and reminder to cherish every day. Even grumpy days are glorious!