Friday, September 21, 2007

surgery delayed

Ethan had his cardiac appointment at the end of last week. He was walking around the clinic and down the ramps. He was in great form, I hadn't seen him that active for ages. We saw Dr Jim who was happy with his chest and recommended we go ahead with surgery. How ever surgery has been delayed due to our surgeon going away. It means we will change surgeons and squeeze in on the 10th October.

This brought mixed emotions. Changing surgeons, yes they are all good but we like ours, it is now during the school term which means more running around, and a bigger impact on the girls and I need to be fit and healthy to do it (for those who don't know I tore my ankle ligaments a couple of weeks ago, I'm still in plaster, and not allowed to drive!) It is going to make it harder if it doesn't recover quickly from here. But on the positive Eth was great, we can now see the Thomas show and spend the holidays together.

But as usual it was the calm before the storm. The next day he started getting chesty and requiring oxygen. The next few days were up and down. I took the risk and sent him to school so I could put my foot up but they rang at lunch time, his sats were 60%. He has remained at home requiring oxygen on and off. His asthma is up and down with it as well. I have 19 days to get him back up and running and to get myself back up and running. By this time Luke and the girls will need to rest as they are doing a hell of a lot of running now!!

He has also had a few more seizures. He had the EEG a few weeks ago but I haven't been able to chase up the results, too many other things going on!

I will update this again before surgery and we will keep it up to date following surgery. Take care, Jo

Saturday, September 01, 2007

Focal seizures

Ethan was recovering slowly from the RSV. He remained a lot bluer and lethargic but was keen to have a couple of hours at school. The portable oxygen was set up, the bus arrived and all was well.

I got there at 11 to pick him up. On arrival Andrea, Ethan's teacher made comment about his facial twitching. There was a slight twitch at the side of his mouth which had been there all morning. As we stood there talking it got worse. It became a flickering of his face and he was absent. I rang the doctors and Ethan was readmitted to the kids hospital. We were told he would need to undergo some scans and tests to find the cause. Ethan had an MRI under a general anesthetic. It was a nervous wait but we were told the words we wanted to hear, "there is no tumor and there is no evidence of major stroke"

The next day the neurologist came to see us. "There is no evidence of any tumors or of a major stroke but it does show he has had a stroke in the past, and he will need to have EEG test to rule out epilepsy". This was at the front of my mind for a while but he was fine and there was no evidence of any more seizures, purely symptomatic to being so unwell the few weeks prior, so it quickly moved to the back of my mind and his cardiac function resumed front position.

He was getting back into school. A half day here and there, a full day Friday. The weekend to recover and a full day Monday was the plan. All was good. He was at school on Monday when his oxygen levels dropped. The school nurse recorded them at 60%. From there he has deteriorated requiring oxygen full time and at higher rates. I diagnosed pneumonia and rang his respiratory doctor with a request that I increase his oral antibiotics, give him oxygen full time at home, give him chest physio a few times a day, get an xray at his cardiac appointment and we stay home. This was agreed to but he also said he can arrange an admission if needed.

We had the cardiac appointment yesterday. A chest xray was done and yes he has pneumonia. The plan is to keep managing him at home and a review in 2 weeks. We are now facing the dilemma of delaying surgery. I tried to tell them after the RSV that he would get pneumonia before surgery. They like it to be 6 weeks after a chest problem before cardiac surgery but Ethan will not go 6 weeks!

The other issue we are faced with is that since his oxygen levels are lower (65% with 2litres of oxygen) he has had another 4 seizures. They were all small but they happened. It seems they are linked to hypoxia. We are able to increase the oxygen while he is unwell to help reduce them but we were warned its not good for his lungs!!