Ethan has remained up and down. Sometimes he is great and full of cheek and at other times he is quite flat. We have had numerous appointments trying to get to the bottom of what is happening with him.
Paediatrician: Chris had not seen Ethan since before Sildenafil so even though I was very concerned about Ethan, Chris couldn't get over how great he looked. He had the results from the sleep study infront of him. He suffers with delayed sleep onset and reoccurring awakening. No suprise there, the bags under my eyes could have told them that! As a result Ethan was commenced on Melatonin. It works great. 5 drops before bed and he's out like a light. The only problem was that he was still waking during the night. With a bit of trial and error we know that a couple of hours of oxygen at bed time stops that. I am happy we have worked it out but annoyed that maybe the last 5 years of no sleep could have been avoided!!
Respiratory physician: David was happy with his chest. No wheeze or crackles. All clear. It's all cardiac. I was hoping he would tell us it was pneumonia so that he could have some antibiotics and be better but this meant it was all cardiac. (and we know with his cardiac issues there's nothing we can do)
Cardiologist: Tests and more tests. The 6min walking test was first. He managed 328m. The last walk test he managed 235m. A great improvement with distance but his oxygen levels during the 6 minutes dropped dramatically. They started at about 80% and dropped below 55%. He struggled and grabbed his chest a few times. He also had to be hooked up to a holter monitor for 24hours. In the next couple of weeks he will have an echo. We go back to see her in August with the idea the Sildenafil dose may need to be increased. He is already on a high dose but they can go extreme! That's if the rest of his body can cope with it. Not too sure what I'm hoping for.
ENT: Ethan's hearing and ears remain a problem. He suffers with constant ooze from both of them. He was commenced on ear drops which causes him a lot of pain. With everything he has been through it's hard to believe ear drops cause him to run screaming. Everytime he saw the bottle he would go and hide, but he was easily found, I just had to follow the screaming!
Since these appointments Ethan has remained blue and puffy at times. The school nurse has reported episodes of tachycardia and fatigue at school. I am hoping the holter monitor has recorded some of these episodes. He is also coughing more. The clear chest he had has definently gone. But he did manage to avoid Swine flu even though it was in the house (Poor Adele copped it bad). Ethan was commenced on Tamiflu and was given the influenza needle. This did the trick and he didn't come down with it.
We have also sat the girls down and told them about Ethan's prognosis. Not an easy conversation but one that had to be done. Both girls reacted differently. Erin got in first with what she thought and Adele cried and changed the topic. Not sure if Adele changed the topic because of her immaturity or as a diversion technique. I also spoke to their teachers so they could keep their eyes on them. It is good knowing both girls are in caring hands when I'm not around. They both openly ask questions as they arise now, whether they're at school or at home.
Ethan is still enjoying school. His work ethic is up and down depending on his health. The goal of Ethan being able to write down words or part of words to help with his communication is coming along. He is picking up on this and using these skills with You Tube and Google! His 2 teachers, Jennifer and Mary are great. They are alot more patient than me!
Ethan's love for footy is bigger than ever. He loves watching it if the team he is barracking for is winning, if they're losing he is the biggest sore loser. He is known to kick, throw punches and run off crying. During the Collingwood v Bombers game, He hit Uncle David with a stuffed pig when the Magpies kicked a goal even though the Bombers were in front at the time. He can't handle losing, but is very quick to stir and rub it in if his team is winning and yours is losing.
Ethan is constantly thinking and talking about loved ones. He has been speaking about Poppy John (my uncle John) a lot lately. My cousin Leisa is pregnant and after the baby is born he wants to take it to visit Poppy John. When I asked him how, he said he would hold the baby in the plane as it flies in the sky through the clouds to heaven. I explained that it couldn't be done and he got angry that the new baby couldn't play with Poppy. He must be thinking about it a lot because one morning when I woke him he said, "I'm not going to school tomorrow, I'm sleeping at my cousins, I love my cousin, cousin Leisa". Apparently Ethan is going to give the baby brown and blue icy poles like Poppy did for him.
Jo
