A bit has happened recently. Ethan had his latest Cardiac Catheter procedure on the 24th April so the cardiology team could get an up to date assessment of his heart condition. We weren't told much afterwards apart from one of the Cardiac Fellow's saying it was unlikely they would operate on him soon. The results are discussed on the following Monday with the surgeon's. We eventually received a letter from his Cardiologist saying his blood flow to his lungs is still quite restricted and there is little likelihood further surgery or ballooning narrow arteries would help. If they closed his hole and replaced the conduit with a bigger valve, it would put too much pressure in the lung circulation and cause damage to his lungs over time.
Next was a visit to the Peadiatrician. He had in front of him the 'technical' version of the cardiology letter. This basically said there wasn't anything they can do for Ethan, apart from possible palliative surgery. He is walking a fine line. Ethan is out-growing his heart and his lungs.
So we booked an appointment with the Cardiologist to clarify things, Dr Jim said 'Will he live to 70? No. Could he live to 20 or 30...well...maybe..possibly..but there's other things going on'. He said the asthma medication is not good for his heart. He then went on to say to take things on a month by month, week by week basis. So we left there feeling pretty average.
We visited the Peadiatrician yesterday who was a bit more upbeat about his prospects. Sure, he will struggle during the colder months, but he feels we should take things on a year by year basis. Should we move to Queensland? won't make any difference. Can he have a heart/lung transplant? Unlikely candidate as he is only 18 months past chemo treatment, plus it is nearly impossible to get heart/lungs the right size, plus the right tissue type, plus the anti rejection drugs aren't good for you either.
On the positive side of things, Ethan had his Oncology appointment on Tuesday (abdo ultrasound and chest xray) and all is clear. His Doctor is very happy with his progress.
Apart from all that, he is into karate chopping people and being a real little boy. He is pretty happy when he's well.
Luke
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Not so good news for you all, but Ethan is a fighter and I know none of you will give up. We will continue to hope and pray for you all. Medicine is progressing all the time and our hope for you is that Ethan can fight long enough for a medical breakthrough to help him live to be a happy old man.
God bless you all,
Judi Maxfield
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