Tuesday, March 23, 2010

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!


Anonymous said...

Keep battling on you guys. Hope the dreams are amazing for all. Keep dreaming.
Judi & Rob

Anonymous said...

Glad the girls are getting their dreams soon. Ethan seems to have the same cheek. Hope you all have a good day and night away. Still thinking of you.
Catherine Brittain and family.

Anonymous said...

That is fantastic that the girls dreams are coming true, they are so deserving!
Your back yard definetly does need attention, those weeds must feel fairly neglected, lol.
Love you all

Anonymous said...

Dear Jo and Luke,
My hat comes off to you guys especially you jo you are having a really tough time at the moment and it must be hard for you to be house bound as you are such an active outgoing person with alot of socialising to keep up with. I hope you are getting some respite and maybe able to get out with the girls or do some much loved exercise at times. You guys are always in my thoughts and I am always hopeful that ethy is having a not so bad day pain and comfort whise. I thinks its great that you are getting a night out at the Hilton and having some landscaping done you deserve to be pampered with everything you are dealing with at the moment. I will be home on friday and look forward to catching up with you
Love Jackie xxoo

Sal Murgana said...

Loren knows about Erins dream and has promised not to mention it as she knows how important it is. She keeps telling everyone that she is going to have the best Easter of her life! I'm so proud of your girls Jo and they deserve this very special treatment. I only wish I could be a little fly on that limo ceiling! Kristen is going to have to pack lots of Panadol because I'm sure there is going to be alot of squeeling and excitment!! Have a great time! Love Sal xxxx

Hornbill said...

Hi there,

Can you write to hornbill2u@gmail.com and I have a suggestion for you regarding Ethan

best regards