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…
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!
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!
I haven’t done a WordPress Daily Prompt for ages, but this one seems so apt this week: If you could fast forward to a specific date in the future, when would it be?
I have two, though I don’t know the exact date of either. With the Jam’s operation looming over us I just want to get through next Friday. The first day I’m looking forward to after that is the day we move from PICU to the main ward – that short journey is the first step towards going home, and it will mean he’s well enough not to need his own nurse 24/7. The other unknown date is the day we go home – the day we put these operations behind us and get on with the rest of our lives. The Evelina is a wonderful hospital, but I’ll be glad to leave. It’s likely to be several weeks away so, appropriately, we’ll be moving into spring; I can’t wait….
For anyone who follow this blog for the original reason – the story of a little boy with a serious heart defect – rather than for my ramblings about knitting / baking / books / nonsense, this is an important update:
We went to the Evelina for the Jam’s latest cardiac check yesterday* and he’s well. Oxygen saturations are 85% (scary enough to set off the alarms for ‘normal’ folk, but very good for him); he’s also gained weight and got a bit taller. I learned that an ECG is much quicker if you tell the person doing it that the Jam’s heart is on the right-hand side of his chest.
Our lovely consultant – Dr Mathur – then broached the subject of the long-expected third operation, the final stage which will complete the Fontan circulation. It’s not urgent but there’s nothing to be gained by waiting so he agreed to give us the Jam’s birthday and Christmas then schedule it early in the New Year. We’ll get confirmation of the exact date in December but it’ll probably be mid-January.
I intended to write about how I feel about this news, but to be honest I’m not sure yet. I don’t want to hand him over to the surgical team – despite their undoubted brilliance – yet I know it has to be done. If it has to be done I’d rather get it over with sooner rather than later. He seems well now and there will be a lengthy period in hospital after the procedure, but apparently after that he will be stronger and more energetic, so it’s the best thing for him. It’s not a ‘fix’ – there’s no such thing for HLHS other than a heart transplant, and that brings its own issues – but he will be (relatively) better afterwards. I worry that he’ll be in pain or frightened or bewildered that we let them hurt him. I worry about darker vaguer outcomes that I refuse to consider. I worry, but luckily my little man is strong, happy and much braver than me….
* We always try to make the most of the day in London so then we went the London Transport Museum, but that’s another blog post…
Enough is enough! The last few weeks seem to have brought so many final straws that the camel’s back has been broken, ground down and the dust blown to the remotest corners of the planet.
Firstly, our lovely new house. It is lovely, but it does need some work. We knew this, but we didn’t realise that every single job would turn out to be bigger, more expensive and more time-consuming than expected. While sorting out the flat roof, we discovered we had to redo the render on the extension and while doing that, we found we needed to replace the guttering and fascias and soffits. (I didn’t even know what fascias and soffits were until last week…) The wiring is a mess and though I know FiL will do a fantastic job sorting this out for us, it’s still going to be messy and take time. Curtains for the bay window are complicated because we can’t fix the track to the ceiling and we recently discovered that we don’t have any hot water when the heating isn’t on…
The other major thing is that the Jam’s MRI is now so close that I can’t ignore it anymore. The purpose is to plan for the next operation, so it’s not as if we’re going to get a shock when they tell us he needs surgery, but it’s still an unpleasant two or three days. He’s too young to lie still enough, so it has to be done under general anaesthetic, which means at least eight hours fasting beforehand. The GA also depresses his respiratory rate, which is not great for someone whose oxygen saturations are only around 83% on a good day. He’ll be okay next week, but it’s a vivid reminder of how serious his condition is, and that all too soon I’ll be handing my baby over to the same team for several hours of open heart surgery.
Thirdly, I’m not pregnant. I’d like to be, but this month I’m definitely not…again. As an added bonus I have backache and cramps to emphasise the situation.
As if we didn’t have enough on our plates, this morning I managed to gouge a large chunk out of the sidewall of the newest (of course) tyre on our car. It’s still inflated but for safety it will have to be replaced. More time, more money…
Lastly (and least, but still irritating) the new sim card for my phone, which EE promised would work as soon as I inserted it, didn’t work. It works now, but only after a lengthy phone call, most of which involved listening to terrible music while on hold between advisors.
I know that many, many people have much worse things to deal with, and that some of them do so with a smile on their faces. I do try, sometimes so hard that my cheeks ache, but sometimes I feel that coping with the big stuff (the Jam’s CHD) ought to mean that I don’t have to deal with all the little problems as well. Sometimes I just don’t have the energy, patience or hope left for all the stupid niggling things (the proverbial straws) that should’t even bother me, things like tyres and phones that I know don’t really matter. Sometimes I just need to rant at the world – thanks for listening.