Uncertainty

Overall Ethan was a lot happier and more alert yesterday. He started the day in pain which led to the morphine infusion being increased. This increase seems to be the right dose to manage his pain as he is showing signs of his usual cheekiness; calling the doctors losers and smacking the nurses on the butt!

Ethan had a lot of visitors yesterday. He loved it. He was extremely exhausted last night sobbing to get to sleep but he had a great day. It was good to see him interacting and happy. Ethan is very social so even though he was exhausted at the end of the day he wouldn't want it any other way. If you want to visit please don't stay away because he is tired, he loves visitors, he always has and it is 'normal' for him.

We have had many people ask whether they should come to see him, they don't want to miss the chance to say goodbye etc. We can not answer this question. We don't know when Ethan will pass away. We have a lot of uncertainty about Ethan's future. This is a decision everyone has to make for themselves. If this is a thought that has entered your mind, here are some facts to think about..

We know Ethan has deteriorated. His cardiac function is under a lot of pressure and his body and main organs aren't getting adequate oxygen. He is getting chest pain because his heart isn't getting enough oxygen, headaches because his brain isn't getting enough oxygen. He could pass away suddenly from a seizure or heart attack. To add to this he has the extra demand of infection, will he cope better when the infection goes, maybe, maybe not. If yes, the disease is still progressing and we aren't in winter yet. Any infection could tip the balance.

He could potentially pass away with the next walk to the toilet or he could slowly start to deteriorate. He is sleeping more because his brain isn't getting enough oxygen, the window period of being alert and awake may slowly decrease. He may become more confused and disorientated. It could be a slow progression over the next few months. The answer is the doctors don't know, we don't know. He could pass away today, tomorrow, next week, next month, in 6 months, we don't know.

We do know life as he knew it has changed. He is in pain, sleeping more and showing signs of confusion. The ability to pick up and go has changed. He won't be going to school 5 days a week. We will be nursed at home under the supervision of the palliative care team. He is happy and cheeky when the pain is under control. This is an uncertain time for us all.

We spoke to the girls last night again. It was hard. No 6 or 9 year old should have to try and understand. It's hard enough for us adults. I'm continually amazed be their strength and insight. We are lucky to have 2 beautiful, bright girls.

Thanks for all the messages and support.