nozinan effect

Over the weekend we continued to play with medication doses. The pump has remained on Nozinan 12.5mg, Midazalom 20mg and Morphine 40mg since Sunday. This seems to be the right dosing. The change in medication hasn't improved things but we can now increase the pump doses as he deteriorates. He is still having the odd breakthrough and not settling well during the day. The last 24 hours have been even more difficult as he missed out on most of his medication due to the needle being bent, poor nursing skills with that needle insertion! The pump is checked regularly to make sure it is working however I must admit I have been slack. You can see the light flashing through the bag and hear it so I didn't take the syringe driver out, if I had I would have noticed the lack of movement. Lesson well and truly learnt. He has been a nightmare today but I know tomorrow will be better!

Our biggest issue is his fighting of sleep. He refuses to sleep during the day as he's 'not a baby'. He is a walking zombie. He eats non stop to stay awake. He also has edema in his abdomen and it is very tight and full. It is the first time he has had a little pot belly and is heavy to pick up. The added pressure and volume in his abdomen is causing his breathing to be quite fast and shallow. He also has facial edema causing his face to be very full and tight and shiny in appearance.

He is that tired he falls over. I have caught him falling from the dining table and toilet. But there have been times we haven't been as lucky. He has had a few falls while walking. He fell walking into the toilet, luckily he didn't hit his head on the porceline on the way down! He is very stubborn and pig headed so will not let you help him.

The girls are exhausted. They are having issues with the amount of visitors. We have created a 'quiet space' which no one is allowed to go in. I have explained that Ethan and I are house bound, we have no contact with the outside world. The only communication and interaction we get is from visitors so visitors are welcome. But we need to be aware they are trying to keep a normal routine, learn new things and be kids. They are dealing with a lot and need to come home and relax. So far the 'quiet space' is working and most people are understanding of this.

Ethan did manage an outing yesterday. The 4th one since this all started. He went over to Glenallen for a friends birthday. It was a nice outing. We managed to draw it out to 40mins!

Some good friends are organising some landscaping for us. The details are being kept from us but a lady came today to talk to us about plans and get our input. They should get the detailed plans in a couple of weeks. We are on a need to know basis and I am starting to feel that most of you might already know about this.

The girls dreams are definitely going ahead. I realised the other day when a friend asked, I haven't mentioned what they wished for. Erin wanted a pink stretch limo ride with all of her friends to the Hilton for lunch; a girly day to share with her family and friends. Adele wanted a BMX. We are also staying at the Hilton for the night as an added extra. Little Dreamers are a new charity that grant young carers or siblings dreams. Little Dreamers Online

Ethan will go on his own holiday to VSK as he is now too sick for friends and family to mind. They are the best people to care for him at this stage with the added bonus he loves it. He is staying 2 nights but he cracked it at me today as he wants to stay 6 nights!