Over the last week Ethan's behavior has been much the same; wanting to watch a DVD, then 2 mins later wanting a PS3 game on, then wanting to go to the toilet, then wanting to lay down, then wanting to eat etc etc. To add to this he is still coughing blood and is physically exhausted. He is now a danger to himself. We can not let him do anything by himself in case he falls asleep and falls. This means sitting at the computer, dining table, on the toilet etc. I have already caught him falling off the toilet once. We had one day last week where he was that agitated he ended up with 6 different break through doses and was still up yelling with his eyes closed, when he did finally go to sleep for the night he was up 6 times. We don't know why this is but it is physically and emotionally exhausting.
We have had a few changes in medication to try and help. The Haloperidol was increased to 3mg at one stage. This calmed him a lot. He was no longer yelling, he was tranquil but still agitated and pacing around the house changing from thing to thing. The Haloperidol has since been ceased, the Midazolam has been decreased to 30mg (from 40mg) and a new drug, Nozinan, has been commenced. At the moment there is no real change in his behaviour or sleepiness. Over the weekend we are slowly increasing the Nozinan and hopefully decreasing the Midazolam some more. It is going to be a tough weekend trying to get the medications right. But we may never achieve this. While we are trying for the correct doses, his heart disease and cardiac failure is worsening, he is still coughing blood and therefore becoming anaemic, his kidneys and liver are under attack from all the medicine. It is a tough and vicious circle that can only end one way.
The girls are coping extremely well considering what is happening. I am always amazed at their strength and ability to function. They are carry a huge weight on their shoulders but just suck it up and get on with it. They will get their dreams soon so that will be exciting for them and us. I haven't told them, I am trying to keep it a surprise. They are gorgeous girls that deserve so much more.
8 comments:
It's been an anxious week waiting to hear what has been happening in your world. We knew it wasn't the case of "no news is good news". Your love and courage is certainly holding you in good stead. Your ability to sit and write of what is happening under such conditions is astounding. Your stamina will last as long as it is required - that's what love is all about. You inspire us all. Joan and Andy,
Wow......you are all so truely amazing. We send you all our love, strength, hope and support. You are always in our thoughts. Carrie, Shaun and family. xoxoxo
The girls are amazing - their love for Ethan has always been so true. I hope their dreams give them some happiness as they deserve so much.
I hope the drugs get sorted out without too much stress and Ethan can have some happy momments with you all.
Jo and Luke - You are very strong, loving and truly amazing poarents in every way. Love Anna
Thanks for posting all your thoughts of the week. I hopevthe Meds get sorted and you have some well deserved sleep. That is wonderful for the girls hope they love their dreams. Love from Sandra Broadbent. Xxxxxx
My thoughts are with you every day. Jo and Luke your strength inspires me....I can not begin to imagine what you are all going through. Erin, Ethan and Aredel are lucky to have such amazing parents! Lots of love and prayers for you all at this time x x x Cuz Lauren
I have been following your postings regularly and just want to let you know that I am praying for you all at this very difficult time. Your strength has been amazing thoroughout this journey and I pray that it will continue.
With Love, Alison Glover.
Have been thinking of you all. Hard to know what to say but we are always thinking of you and Ethan. Sounds good that he has had his meds reduced and you are getting somewhat of a balance. Thank you for the updates, even if they cannot be very frequent.
Lots of Love, Catherine Brittain and family. xxx
Another long week by the sounds of it...I don't know how you do it - just a case of you have too, I guess. No words will make it any easier but know that there a lots of people out there thinking of you and admiring you. Cassie Kennedy & Family.
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