Witterings

Its qualified good news - Caitlin has a really messed up heart, but its not classic hypoplastic left heart syndrome (HLHS) - the left hand side is hypoplastic in nature (ie undergrown), but she has a good aortic arch, which is one of the most serious elements of HLHS that requires the most invasive of procedures.

As a result, (subject to confirmatory scans etc later on), she doesn't have to go through the Norwood operation, which is the first & riskiest of the treatments that would ordinarily be required. Insead, a much smaller & simpler operation is needed to stabilise her, which is fantasticaly good news & dramatically improves her chances, both of survival and recovery.

In addition, the cardiologist is confident that, whilst she will have to have a 1-stroke heart, rather than the traditional 2-stroke version, she is expected to have a good length & quality of life, with an initial estimation of 40+ years, which, whilst lower than 4-score & ten is within the parameters of (say) someone who is a heavy smoker. Of course, these are all preliminary findings & things might go wrong, but its the first element of good news that we've had for a while.

There remain, however, potential problems. Firstly, her pulmonary artery is very very small (which is a bad thing) whilst her pulmonary veins are arranged in a really odd manner - so much so that the cardiologist isn't even 100% that she has actually identified the pulmonary veins. These are extremely serious issues that, if confirmed, would reduce her prognosis, and, in addition, there is an odd growth in the heart where the pulmonary veins should reconnect - which doesn't seem to do anything. Whether this is a problem in the longer term is uncertain, but the fact that it is there is... unusual. Hopefully these will grow & resolve themselves, so fingers crossed, but, y'know, its still a concern.

So there we are. Its not all puppies & sunshine, but we've been told that there's a very good chance that Caitlin will survive the operation and make a full recovery to a level that is indistinguishable from a normal child, though with some limits. Mind you, I suspect that the 'limits' might be more mental than physical, as our consultant has a former patient who routinely cycles 10 kilometers to school (and back) each day. Oddly enough, she's finding it a bit challenging - but she can do it.

Mind you, I'm not sure that *I* could cycle 20 km each day, though!

S

After several conversations, C & I now have a grasp on the practicalities of the situation we find ourselves in - whilst its not much, it does give us a framework in which to work, rather than thrashing around in a vacuum. I have to confess that it doesn't help much, but getting engrossed in the details of the Norwood procedure, its statistics and who the doctor is who we want to perform it because they have slightly better survival rates makes us feel slightly less helpless, and, deluded as we know this to be, we feel that we now have some limited traction over our lives again.

We are working on the basis that this is a challenge, and is something that has to be overcome - the operation is, at time of writing, deemed to be the best course of action (but is subject to further information being obtained), and we've had several discussions about how we can make decisions in stressful periods. Most difficult of all was to establish who had the right to continue with the process and who had the right to end it; we have decided to go with the policy of ' if either of us want to continue, then we continue' rather than the 'if either of us wants to end it, we then end it' as this gives her a better chance, and also (from my side, certainly), ensures that there is less chance of us feeling guilty, should the worst happen. It feels cold and abstractly rational to be thinking along these lines, but I suspect that both C & I would make good doctors, had we actually applied ourselves along these lines.

The most damnable thing of all is the numbness, and something that my mind marvels at in a detached, coldly interested manner; for periods of time, the agony will fade from being visceral, hot, raw and salty into a numb halo, a background noise of sorrow to everything. I find myself touching things just to feel something - be this a piece of cold glass, a wooden post, a sharp knife, a soft pillow, a piece of chocolate - not to use them, more just to remind myself that they're there, they're independently real and this isn't some tortured dream.

I'm eating junk in prodigious quantities - not because its what I want (with the exception of crisps which sate my salt cravings), but more because I cannot muster the energy to cook properly as just about everything is happening on autopilot. Oddly, I cant drink alcohol, or listen to music - the idea of having a drink scares me, possibly because I'll loose whatever meagre control I have and the anguish will all come out, leaving me in a worse place than I currently am in, so I'm not going there. Music on the other hand, is just wrong somehow. Perhaps I'm overanalysing it, but music was always a release for me, and again, I dont want to loose myself just yet. Not yet.

I suspect that these are part of the healing signs; when I can go these again - in a constructive manner (ie drinking socially, not falling into self-destructive behaviour & being able to retain control) - I will know that I am recovering. I dont know if this is true, or just a vainly overanalysed hope, but it'll do as a signpost to mental health for now.

C is in a similar place, but we're both trying to help the other one cope - one breaks down, whilst the other holds them, then the other one, and so forth.

We'll get there. We're strong together and every day with Caitlin is a blessing. I cant tell you how I will feel tomorrow, or even 5 minutes from now, but here & now, I can fake being 'ok' if the shadows are right & you dont look too closely.  

S