Saturday, November 03, 2007


Ethan's hb was ok, so we were discharged without the need for a blood transfusion. We were out in time for school pickup and even though Ethan didn't want to see or talk to anyone I made the trip to school. He was still in a horrible mood but when he saw Erin, he was happy as Larry. He gave her a big hug and told her he loved her. It was so cute. I was hesitant about being discharged, his sats were still low and he still had a nasty cough.

One of the first things Ethan said to me the next morning was that he wanted to go to Monash, he needed IV antibiotics and physio. I knew from that point I was in for a tough time ahead. We managed him at home with oral antibiotics, and home physio for a week until our paediatrician appointment. Ethan had decreased air entry in his right lung and crackles in his left. The paediatrician rang our respiratory doctor and we were admitted to Monash.

Ethan also has weight issues. He is on a high calorie diet because he doesn't put weight on. He manages to fall below the percentile chart every weigh in and in recent time he has lost 1kg. He is now the weight of an average 3 year old. We have been seeing the dietitian to help, but as the saying goes, "you can lead a horse to water but you can't make it drink". I know his appetite is increasing and he should be back up to the 3rd percent by Christmas.

Other issues spoken about with the paediatrician were his focal seizures. As he hasn't had anymore and we can link them to oxygen deprivation he won't be commencing anti-epileptic medication.

Palliative care services were also spoken about. The paediatrician doesn't think we need to get these involved as yet. He believes that the resistance with his blood flow and low saturations is due to the pneumonia and once that is treated he thinks Ethan will cope a lot better and we will be able to see the benefits of the latest cardiac surgery.

The plan with the Monash admission is for 5 days of IV antibiotics and intense physio sessions twice a day. We are now at the end of our stay and Ethan is a lot better. It seems the paediatrician was right. Ethan's oxygen levels are higher and he is a lot happier. It will be interesting to see how much the flow through his conduit has improved at the next cardiac appointment.

1 comment:

Anonymous said...

Well we hope the complications are behind you now and you start to see the benefits. Hang in there guys.
Judi & Rob