Where do we start. A bit over a year ago we were told there was nothing more they could do to correct Ethan's cardiac condition, the VSD couldn't be closed and the pressure in his pulmonary artery was high. He would eventually out grow his heart and lungs.
He has had a great start to the year; happy, playful and doing well at school. He has been developing into a big boy. He is reading and writing. But then he started getting blue and not having much energy. He couldn't do the things he used to, he needed to be carried or put in the stroller and he started falling asleep on the bus, both to and from school. He was also having a lot of trouble sleeping during the night. Life became pretty demanding and his illness was playing a huge role and having a huge impact on everyday things.
He was getting recurrent pneumonias from aspirating. The respiratory doctors were treating him with thickened fluids, antibiotics and physio. He was unofficially diagnosed with bronchiectasis and that is why he had the tune up before Fiji. This was helping but when Ethan had pneumonia a month ago we were told they thought his low oxygen levels was more cardiac than respiratory now.
The line between respiratory and cardiac had become blurred. I wasn't sure what was what. We had his cardiac outpatient appointment and it was decided that Ethan's case would be presented at conference. We were to ring for the results and in the meantime if we were worried or concerned to take him to hospital.
I managed him at home for a week but ended up completely exhausted. I took him to the Kids Hospital. The plan was for 24-48 hours of cardiac monitoring. While we were there his cough was getting worse. He was diagnosed with a virus. The docs kept saying he would get worse before he got better and this is what happened. The virus triggered his asthma. He had a major asthma attack and was placed on huge amounts of ventolin. The respiratory doctors and the ICU doctors were also involved in his care. I had never been so scared. It is a vicious cycle. The large amount of ventolin increased his heart rate to dangerous levels but was needed to open his airway.
The cardiac doctors had their conference. The tests showed that the conduit has become restricted and the valve isn't working, limiting the blood flow and causing him to be bluer and not have enough oxygen. The problem we are faced with is that a bigger conduit increases blood flow to his lungs, yes better oxygen and energy levels but this will flood his lungs, increasing his pulmonary hypertension, causing irreversible damage to his pulmonary circulation. We are backed into a corner, dammed if we do, dammed if we don't.
It has been a very tiring couple of weeks. We have decided to change the conduit. This will be done on the 26th Sept. We are hoping this will give him better quality now and in the short term. As the pulmonary hypertension progresses he will become bluer and his oxygen will drop off again. To complicate the crappy pulmonary circulation he also has reactive airway disease (asthma) and suppurative airway disease (bronchiectasis). Both of these illnesses can cause major complications and it is the thought of what these illnesses can do which scares me the most.
Jo
