Over the last 4 months Ethan has struggled on and off with being active. Sometimes he seems fine and at other times he needs to stop as quick as he starts, he turns a purple color and grabs at his chest. It then takes a while to get his color and breathing back to normal. There has been a couple of episodes where he has gone extremely blue/purple and fainted. One of these episodes happened with the girls. Ethan didn't want Erin playing with one of the million Thomas trains, she was only to have the crappy old red one so he snatched Thomas and ran. Erin was in hot pursuit when he collapsed. Erin was screaming "I've killed him", Adele was screaming "he's dead, you killed him". It was hard trying to deal with Ethan while trying to calm the girls, eventually everything calmed down and I made myself a strong coffee! Trying to debrief with the girls afterwards was difficult and has raised many issues on how much do they need to know? It also raised the issue of how much does Ethan need to know?
To add to these episodes Ethan has also been unwell with pneumonia. At our respiratory appointment I explained Ethan's cough patterns which lead to an admission. Ethan cracked it with David (doctor) as there were no beds on the Thursday but he was very excited and happy on Friday when we got the go ahead!
David also wanted the cardiologist to review Ethan to rule out endocarditis. The cardiologist who has known us from day 1 was concerned about the blue episodes being a rhythm problem rather than from the pulmonary hypertension. From there Ethan had an echo, ecg, chest xray, 24hour holter monitor and a stress test on the treadmill. We were told the ECG and echo were normal, I think they meant normal for Ethan as there is no way they can be normal! The holter monitor showed some variations but they were rare. The cardiologist hasn't gone into details about them, but she wants Ethan to have an event monitor for 3 weeks. Ethan coped well with these tests but I knew the big hurdle was his cooperation on the treadmill. How can you get a 6 year old boy who feels like crap on exertion to walk on a treadmill at different intensities while being connected to ECG monitoring, blood pressure and sat machines? His cooperation at 100% was needed if we were to get any results. The answer Bribery! First stop Kmart. Ethan was fascinated by some lego at a friends house and was asking for it for his 7th birthday. So when I appeared that morning with the lego box we were well on the way. "You do the test, you can have the lego". It worked a treat. He got hooked up and away he went with no problems. He managed a massive 3 and half minutes at stage 1 before the cardiologist called it quits. During this time he was extremely blue, sats were 50% and he was complaining of chest pain. It took a couple of minutes for Ethan's heart rate to come down, and sats to go back up. The test showed that Ethan's heart muscle itself isn't getting enough oxygen on exertion. We also need to speak to the cardiologist in more detail about this but it's obvious that it's not the best news going around.
This makes physio harder. Ethan needs to exert himself during physio sessions and the physiotherapists need to encourage him but they can't push him too hard. We are lucky the physios at Monash are good at their job. The cardiologist's orders were that when Ethan says stop it should be respected. She also believes Ethan will stop by himself when he feels symptomatic.
Ethan also had numerous blood tests while we were in. All of which are ok other than his Vitamin D level which is extremely low. We are not too sure why it is so low. It will be monitored and if some more results come back low he will need to start taking supplements.
I've also spoken to occupational therapy about a medical stroller. This will be fitted tomorrow and we can use it for a month. We are unsure about long term use at the moment. The OT at the hospital will speak with the OT at Glenallen and we will go from there.
We are to see our cardiologist at the kids in a couple of weeks. I'm not sure when the event monitor will be organised. I guess we'll find out more on this day about a lot of things. From the respiratory side of things Ethan has to have antibiotics, ventolin, nebulisers and physio sessions twice a day for 2 weeks. He will then have a chest CT and follow up appointment so we can check the progression of the bronchiectesis and plan future tune ups and treatment plans.
