Normal Life

Last week we nervously headed back to the Evelina Children’s Hospital for the Jam’s first post-Fontan cardiac check-up. Although he seems well to us – more energy, better colour – it’s still frightening to contemplate what they might find under the surface (literally).

As it turns out, he’s doing better than we ever dared hope. His oxygen saturations are 93%, which is 10% higher than before the operation (and much closer to a ‘normal’ person’s 99%). His cardiologist (Dr M.) was pleased with what he saw on the echocardiogram too. He described the Jam’s result as “a good Fontan”, which basically means he has a good pump (his single ventricle), unobstructed pulmonary arteries and little or no leakage from the valves. He can fly long-haul; he can learn to swim; he can run around without getting breathless (as he’s repeatedly demonstrated over the last few weeks). When I asked about the future Dr M. reminded us that some of the earliest recipients of this procedure are now in their thirties and used the phrase “normal life”, which is not something we’ve ever heard before in relation to the Jam’s CHD.

normalAfter everything we’ve been through over the last four years, I’m not sure I can remember how to live a normal life. I guess now is the time to start figuring it out…

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Normal service will be resumed shortly…

Thanks to everyone who’s been reading and commenting (here and via Facebook) on the Jam’s progress.  We’re very grateful for your kind words and thoughts. He’s been at home for a week now and is doing well – sleeping a bit more than usual and eating a bit less but that’s to be expected. He still refuses to look at his tummy, but he seems to think getting dressed with his eyes closed is very funny so that’s okay.

He recovered so quickly that I didn’t have as much time as I expected for bedside reading and knitting – not that I’m complaining – but I have managed to finish two books from my book destash list and another pair of gloves so expect posts and pics soon. For now, here are a few pictures of my brave boy:

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To HDU and beyond!

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Recovery is going well – I would say slow and steady but it seems we’re actually ‘quicker than average’ and steady, which is even better. We left PICU on Sunday and have been in the HDU bay of the cardiac ward since then. The Jam is no longer constantly monitored and instead has his temperature, blood pressure and oxygen saturation checked every four hours – he’s been hovering in the high 80s but we’ve seen 92% and even a little higher fairly frequently.
He’s been incredibly brave. He still has two drains in his chest to remove the fluid from his lungs, which is common after this operation, but he’s been up and about, carrying the drains around in a little shopping trolley. He’s also demonstrated a return to his usual strong-willed self by refusing to take his medications without bribery, begging and a number of other tricks! The wound itself is looking good and although dressing changes have been rather traumatic, he seems to forgot about them once they’re done much faster than me!

Preparing

Yesterday we told the Jam about his upcoming operation. I’ve been dreading telling him almost as much as I’m dreading the surgery itself and the long hospital stay afterwards. DH and I have been discussing it for a long time and we agreed to tell him just enough about what will happen to prepare him but then focus on the positive outcomes. He doesn’t need to be worried or scared; that’s our job.

hospbooksI found a little book called Going to the Hospital in our local library. It’s the story of a little boy who has an ear operation and it describes what happens before and after the procedure clearly without being too frightening (though the Jam, predictably, did not want to look at the picture of the boy having an injection). We read it together and then explained that he would be having an operation too, but on his heart instead of on his ear. We told him that he might feel strange or poorly afterwards but we would be with him and that when he came home he’d have more breath and be able to play for longer in the park. He didn’t actually seem very interested but he has a talent for appearing to be oblivious and then repeating phrases verbatim weeks later. He’s already asked about getting presents for being brave, like the boy in the book!

The other book in the picture is produced by the CHF to help prepare children with CHD for surgery but it’s actually not very applicable to us, as it focuses on a little girl (Violet) who regularly turns blue and has to be hospitalised before her operation. Although this would be ‘normal’ for a child with the Jam’s condition, it’s never happened and he would be more likely to identify with the heart-healthy sister (Rosie) in the story!

Doc-McStuffins-Logo-Wallpaper1This week we gave him a Doc McStuffins game for his LeapPad Ultra (which was his Christmas present). He’s been enjoying playing doctor and making the toys better, both virtually and in his bedroom with his stuffed animals. Hopefully the LeapPad will also help pass the time in hospital while he’s recovering.

I’m sure we’ll have more question over the next couple of days, but I think he’s as prepared as he can be. If only I felt ready…