I know that there are a few of you reading this blog who are not related to me, not fascinated by knitting and not here for my erudite rambling about cake and books. I think that you’re following the Jam’s progress and I suspect one or two of you have children with similar heart conditions. I hope that the year long gap in posts wasn’t alarming for you – it really was a case of ‘no news is good news’!
At the Jam’s first post-op check up the report was good and we’ve been making the most of all new possibilities. The only side-effect is that I’ve been so busy living a so-called normal life (as instructed by Dr M.) that I haven’t had time to blog about it. As with most things, the longer you leave it, the harder it is to start again so rather than a huge post trying to cover the whole year, I thought I’d share a few moments and milestones, some of which we never dared hope to achieve.
1. The Jam started (Nursery) school. Okay, we did expect him to go to school, but we did without a complicated care plan and with him doing the same hours and activities as everyone else. We were very lucky as there is another boy at the school with CHD who is also under the care of the Evelina, so everyone took the Jam’s condition in their stride. As well as a making some great friends and is loving learning new things, from reading to music. He’s just finished the year and is very excited about moving up to Reception next year.
2. We felt secure enough to leave him with a non-family babysitter. It might seem silly, but being able to go out for dinner without having to rely on the kindness of family feels very liberating. DH and I finally get some time together.
3. He joined in with swimming lessons, Sports’ Day and even a sponsored skip for the British Heart Foundation. I was a little bit tearful at all three, especially when he won the egg and spoon race. (Apparently it wasn’t competitive and they were racing against their own PBs, but he crossed the line first, which is good enough for me.) Having two CHD children in the school obviously pulled a few heart strings (pun intended) because they raised more money for the BHF than in any charity events they’ve held previously.
4. I have a proper job again. With the Jam safe and happy at school, it felt like the right time for me to go back to work. I managed to pick up some supply teaching in the senior part of his school, which evolved in to a permanent job, starting in September.
5. We flew long-haul! All the way to San Francisco – and we’re still here – more posts about that later.
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…
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…
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…
Woo-hoo! I’ve finally found a fabulous knitting shop that isn’t on the other side of the world (or online, or closed, or requires a complex journey involving multiple train/tube/bus changes). It’s called I Knit London and it’s tucked away just behind Waterloo Station*. The Jam and I went on a recognisance mission today and liked what we discovered:
1) A lovely saleswoman who chatted to the Jam and didn’t seem at all fazed by his close examination of her stock. She even said he was adorable and let him buy a chocolate bar with buttons (and wouldn’t take any money for it from me).
2) Rainbow shelves packed with yarn that you can’t buy on the high street. I bought three skeins that I don’t need, but they were beautiful! One is a bright blue merino/silk blend (called Rubber Soul) from their own brand (I Knit or Dye) and the other two are Manos del Uruguay Silk Blend, which I’ve been eyeing up online but not had a chance to fondle until today. Now I need more patterns…
* That’s one train ride from home and ten minutes walk from the Evelina, so it will no doubt be my sanctuary when we’re living there after the Jam’s next operation.