Lack of O2

Yesterday when Jo and I got to the ward, Ethan had just woken up in extreme pain, crying and writhing over the bed. The nurses had been trying to give him an oral dose of morphine, but he wouldn't take it. Jo then forced him to take it. He continued to be agitated and unsettled until the morphine kicked in, then he fell asleep.

While asleep, we had a more constructive chat to his Cardiologist than previous ones. They tend to waffle on at a high level without letting go some of the details, so i think my frustration with them to the other doc's finally got them to give us the details we thought we wanted.

In summary, it's Ethan's lack of oxygen supply (hypoxia) that is giving him the most pain. He is having headaches, leg aches, chest pain, stomach pain and pain in other places that he doesn't even tell us about. Obviously, this is all due to the dodgy heart plumbing he was born with. The 3 open heart surgeries he had were to improve blood flow and oxygen delivery, which partly worked, but this led to Pulmonary Hypertension which is not recoverable from. The Sildenafil drug helped with the hypertension for a while, but the hypertension still progressed, and the benefit of Sildenafil wore off, even after increasing to the maximum acceptable level. So he is in the state he is in now.

We were wanting some way to track/plot his deterioration with tests that aren't too invasive, and the Cardiologist's said we can do whatever we think is necessary. The problem is, there is no point in doing them because they will not be able to obtain measurable differences. The best thing we could do is the 6 min walk test, but there is no way he could do that now.

So the focus has become pain control and trying to find the right balance so he is not out of it from pain or out of it from too much morphine.

When he woke around lunch time, he was quite sleepy and took a while to wake properly. During the afternoon, he never got to the cheeky moments he showed on Tuesday evening. We had a few visitors which were some distraction for him, but overall, he still seemed to be feeling the pain and wasn't his usual self.