…and breathe

The Jam had his cardiac check today. He hasn’t had an echo for six months, which is the longest gap we’ve ever had. I didn’t think I was particularly worried about this appointment; he seems to be a lively, happy, healthy little boy at the moment and other than a chest infection before Christmas (quickly beaten by antibiotics) he’s been very well. Now I realise that it has been hanging over us and I feel much lighter this evening.

The Jam recovering after the last operation (hemi-Fontan) in May 2011
The Jam recovering after the last operation (hemi-Fontan) in May 2011

Of course, we were hoping for good news but on this occasion it was difficult to know exactly what we wanted that to be. (Actually it’s easy to know what I wanted it to be – “Sorry, we must have made a mistake. Your son has a fully functioning heart and will live a long and happy life.”) The obvious choice is to hope they say that he’s fine and we should come back in six months, or even a year, but we know that another major operation is necessary to complete the Fontan circulation and until it’s done there are more limitations on what he can do. His oxygen saturations are around 83%, which means that he gets breathless when he pushes himself and long-haul flights (to see BLB in Oz for example) are not advisable. After the next stage he will be up to about 95% and able to live an almost normal life…but it’s open heart surgery, with 6-8 hours on bypass. How can you wish that for your child?

Anyway, after a brief detour to check that London Bridge hadn’t fallen down – it hadn’t – today’s appointment went well. The Jam is as healthy as we thought and the consultant was even pleased with his weight gain. There’s no urgency to schedule the next procedure but also no reason to wait any longer. The surgeons will discuss his case at their next meeting but the operation will be sometime this year, probably in the summer or autumn. On reflection, this is the good news for which I hoped; the Jam’s doing really well and we’re going to get on with it…and then get on with life.

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9 thoughts on “…and breathe

  1. Oh, that photo makes me want to cry! What a beautiful, brave baby! I hope you continue to get only good news and that your little boy grows stronger each day, thrives and is happy. What an amazing child!

    1. Thank you for your kind words. So many people say nothing because they don’t know what to say, but it’s the effort to make contact and acknowledge the situation that counts. He’s currently strong, well and certainly very happy, which is all I can ask.
      How are you? I hope your pregnancy is progressing as well as possible. x

      1. Yes, people can get very stuck for words… a shame, really, as I feel that in situations such as the one you and your boy have faced, people clearly will/do care. I am doing well thank you 🙂 Had an appointment at the hospital today, another one tomorrow and 2 more next week… so I guess I am being pretty well monitored 😉 I am feeling good in any case… hopeful and grateful 🙂 All the best to you and the Jam- you’re both inspirations! xx

        1. Thank you. I’ll be thinking of you over the coming weeks. Tried to comment on your lovely new post about the baby shower, but WordPress won’t seem to let me. I’ll pop back and try again later – it’s a great post! Kx

    1. Yes, sometimes it feels like the hardest part is handing him over and trusting someone else to ‘fix’ him when I can’t. Thank you for responding, as I said above, so many people find it hard to engage with this sort of issue.

        1. I do understand that. It makes people uncomfortable and they don’t want to make it worse. Being on the other side I’d rather someone said the wrong thing with the right intention than nothing at all. Perhaps that’s a message I should try to spread.

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