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.
After 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…
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:
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!
Just a quick post to update those of you following the Jam’s progress. The procedure went well yesterday. It was more complex than usual because his heart is turned over towards the right side of his chest, and the arteries etc that they were working on are underneath it so they had to lift his heart out of the way while he was on bypass. However, the team was expecting this and it all went to plan. He came off the ventilator after a few hours but it’s taken a little longer to stabilise his temperature and blood pressure. It’s all looking good now and they’re hoping to remove one chest drain and some of the lines this afternoon. We’re expecting one more night in PICU then up to the ward tomorrow!
Actually it is, but I’m ignoring it. It’s not because I’ll be 35 – half the time I can’t remember if I’m 34 and DH is 35 or if I’m 35 already and he’s 36 but I know he’s older, and always will be! It’s because tomorrow is now the day we will be doing the Jam’s pre-op tests, which is not compatible with birthdays for two reasons.
Firstly, I don’t want the Jam to see me opening presents and cards in the morning, just a few hours before he has to undergo blood tests, an ECG and an echocardiogram (at least). If he knows it’s my birthday, he’ll think we’re catching the train into London to do something nice and while he doesn’t normally mind visiting the Evelina, it’s hardly top of the ‘fun things to do in London’ list. I don’t want him to associate my birthday with hospital procedures in the future.
Secondly, I already know that I won’t enjoy whatever we do after the pre-op tests tomorrow. We’re going to try to make the most of the afternoon – Dad, MiL and FiL will be joining us – but it will be more about brave faces than genuine smiles. On Friday morning I have to hand my baby over to a (very talented) surgeon for a long, difficult and risky operation so I won’t be in the party mood the day before. I’ve always made a big fuss about my birthday – university friends may remember being persuaded to stay up well past midnight on two consecutive nights to drink see it in and out – as it’s a bright spot in an other wise cold and dark post-Christmas month. I don’t want me to associate my birthday with hospital procedures in the future either.
Instead, I’m hoping to celebrate my birthday later in the year, when the Jam is fully recovered and we can all enjoy the occasion. I might even have a summer party with a barbecue and a bouncy castle! If you know me feel free to wish me a “Happy Birthday” tomorrow – it won’t be, but that’t not really what the phrase means. I prefer to think of it as another way to say “I care about you and I’m thinking of you. I want the best for you”. On the other hand, feel free to ‘forget’, just this once…
Yesterday I sprained my ankle, pretty badly judging by the cracking noise and pain. We’re hoping it’s just sprained as I haven’t been able face the epic A&E wait for an x-ray to confirm something I already know – I think I have enough hospital time on my agenda this month. It’s strapped and elevated and I’m icing it regularly. The swelling seems to have subsided a little this morning and I can put weight on it, though I’ve been banned from doing so by my bossy nurse (Dad). Who knew you could buy crutches online from Argos…. Before everyone starts ordering me to seek medical advice, I promise I will if it’s not significantly better in 48 hours.
Today I got the phone call I’ve been dreading / secretly hoping for – the Jam’s operation has been postponed by a week. I can’t be angry. He is well and his surgery isn’t urgent so we’re better off than whoever has taken his slot. The rescheduling is hard for DH, MiL and FiL, who all had to book time off work, but at least I might be able to walk and play with him again before I have to hand him over.
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.
I 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!
This 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…
…that I don’t know how much I’ll be posting over the next few weeks. The Jam will be having his Fontan procedure on Friday (with pre-op admission on Thursday) and I don’t know if/when I’ll have internet access and/or feel like writing. Thank you to everyone for your kind words and support, actual and virtual, over the last few months and in the coming weeks – it all helps. Over the next few days I’m hoping to finish off a few very belated (but much more light-hearted) posts about our adventures last year so look out for those!