Cardiac update

The start to term 3 has not gone to plan. It all started on the Sunday prior when Eth had another haemoptysis episode. I kept him home Monday to keep an eye on him but he was fine, so we sent him to school Tuesday. The school nurse saw him at school and started oxygen but he was well enough to stay the full day. On Wednesday, Eth called for the school nurse again but this time the oxygen wasn't helping. I drove to pick him up and had decided that if he was still yuck when I got there, I would go straight to emergency, but as usual he had picked up. Eth spent Wednesday night asking to go to hospital, so after no luck trying to chase his doctors, I planned to take him on Thursday just to make sure he was ok. I thought we would have to sit and wait as he seemed normal, but we were straight in. His oxygen levels were barely 60%. The things you get used to!

While in emergency he had another haemoptysis episode, he was short of breath and cyanotic. Blood tests and xrays were ordered and an admission planned. After 12 hours in emergency the ward finally had enough staff to open a bed. The plan with the admission was to monitor for any more bleeding, increase his sildenafil, cease his asprin, continuous low flow oxygen, rehydrate and fatten him up. If the bleeding continued he was to have a bronchoscopy.

He was pretty flat for the first 2 days but then seemed to pick up and be cheeky. We had some doctors saying go home and others saying we couldn't, so I decided we weren't leaving until I was satisfied we wouldn't bounce back in. We needed a plan and some support within the community. Our respiratory and cardiac doctors were both back on Monday, so I wasn't leaving until I saw them. Both covering doctors agreed with my concerns so we had day leave on Sunday and saw the doctors today.

I had a pretty indepth conversation with our cardiac Doctor, Sarah. His pulmonary hypertension is causing blood vessels to rupture and then he coughs up the blood. The cardaic tests he had a little while ago support that the pulmonary hypertension is worse. The walk test, even though he walked further than last year shows his sats after the 6min mark are extremely low. It represented the results of the stress test when his heart wasn't receiving enough oxygen. The increase in Sildenafil is the last (unless he puts on a stack of weight) as he was already on a high dose, now it is extremely high and like all drugs there are side effects we need to monitor. He already has all the minor side effects, so we don't want to push it too far. So far these changes have helped Ethan. He has more energy and isn't coughing blood. Here's hoping it continues..

The blood test show that his Hb and calcium levels are a bit low. There is no need for treatment for these at the moment but he will have another blood test in a couple of weeks to see how things are travelling. He needs to start high calorie nutrition drinks and we need to pump calories into him, but it is hard as he is still going blue during meals, not complaining of chest pain anymore, but pulling up short because he is blue and buggered so good luck to us (this could also be a side effect of the sildenafil). If he keeps losing weight we will look at night feeds via a nasogastric tube.

The pain Ethan experiences in his legs is also heart related. Not alot we can do. Just try and make him comfortable. He will require the use of his wheel chair more often to help. Low flow oxygen can also help with pain and headaches. For management and support at home I have re-emphasized the need for correspondance to our paediatrician and we've been referred to South Eastern Palliative Care. Not sure how long it takes for them to get in contact with us but the referral was faxed to them today.

Our little man has remained happy and cheeky despite what is happening to him. It's sometimes hard to believe he is so sick because he is always happy. It is usually at night when he feels the need to complain. We are not too sure what is around the corner, but we have tough times ahead (so the doctor told us!).