Tuesday, November 20, 2007


Ethan stayed at Monash for 5 days on IV antibiotics. He was a lot happier and more active so we were discharged with oral antibiotics and an intense home physio plan. We got home Sunday night and by Monday night he had fevers again. I was wanting to pull my hair out, I couldn't understand why every time the IV antibiotics stopped he had temperatures and struggled. Not wanting to go back to hospital we struggled with physio, diet and the other issues associated with having fevers at home. Finally after a week the temperatures stopped and everything started to fall into place. He had a tough week at the end of a couple of tough months but he has turned the corner now.

He attended school for a few hours last week. It was great to see him have some independence and enjoy himself. It was also a great break for me!

Ethan was lucky to attended Cops 'n' Kids camp with Challenge on the weekend. I had concerns about him going but he had a one to one buddy and there is a nurse present, so overall I knew he would be well looked after. My biggest concern was that he would get fevers and we would have to drive to Sovereign Hill to pick him up, but the thought of getting sleep (even if it is for one night before going to pick him up)was far more appealing. As it turned out he didn't get sick and he had a ball for the 3 nights away and I finally got some sleep!!

Last week we had Ethan's respiratory and cardiac appointment. The respiratory doctor changed his medications a little and told me to hang in there. Overall Eth's chest is sounding better and he is improving so we are doing something right. The cardiac appointment didn't go as well. Ethan's sats are still low. The nurse recorded them at 65% and the flow through the conduit is still restricted so it appears the operation hasn't improved things and the restrictions are due to his pulmonary circulation. Not the greatest of news but there were no promises! Dr Jim also told us that he is retiring and we will see a new cardiologist at our next visit in 4 weeks. Ethan was unfazed by this when saying goodbye.

I have literally just got off the phone to Challenge. One of the camp kids has broken out in chicken pox today. It is recommended Ethan has a blood test and an injection. Not too sure how this will affect him but it does mean he can't be around any other cancer kids for 4 weeks. No playgroup or Christmas party. (Erin also attended camp and they are unsure whether she can attend the Christmas party). Another trip to hospital to get this done but at least it can be done while Erin's in getting her tonsils out tomorrow!!

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.