Coping at Home

It has only been a day since I updated this but so much has happened.

Yesterday before we came home, Ethan had an episode of acute confusion. He was angry, crying and throwing stuff. The nurses had to give him an injection to calm him down. It was horrible seeing a beautiful, loving boy be so angry.

Before leaving, I spoke with the doctors to make sure we had all bases covered at home, what medications to give and how much exactly. This again raised the question as to where we want be; at home, hospital or Very Special Kids. Technically Ethan could still be in hospital but we want him at home and hopefully we can keep him at home until he passes away. This decision will get reviewed every time something new arises.

Night one back home, I just wanted to sit on the couch and watch NCIS. In the small window period of working towards this, Ethan had a sudden pain episode. The Emergency medication box was opened and break through Morphine given. Ethan then stood on his tubing and pulled the site dressing off. I then had to change the dressing. Meanwhile, the air mattress that was delivered started alarming. I rang the 24 hour hotline to be told someone will call back. So in the back ground an alarm was continuously buzzing. The girls who are sleeping on the bunk beds started mucking around and annoying each other. Cute when looking back, Adele hanging her head over, or dangling her foot but late at night when your exhausted and they're yelling and screaming instead of sleeping, not good. I finally got to sit on the couch (the alarm still buzzing despite being completely unplugged), when Adele came down with a tooth that had fallen out. It was very hard to show happiness and build up the tooth fairy, when all I wanted to do is yell "get back to bed, FFS I've had enough".

The alarm for the bed went all night. It woke me several times. I looked at it again this morning and restarted it. The alarm stopped. About 20 mins after this the 24 hour service people got back to me. Apparently there is a silence button!!!

Ethan was up and down a bit during the night. At one stage he checked the morphine pump to make sure the light was flashing. He was happy and told me brightly, the lights blinking. As cute as it was, I was too tired to appreciate it.

Today has been up and down also. He had some great periods and some confused sick ones. The emergency drug box was again opened on more than one occasion. At one stage he was dry retching and blue, and struggling, I was trying to get syringes, needles and break open ampules while trying to hold Erin and comfort her because she was scared shitless. It was bloody hard to deal with. Adele mean while was on the couch reading to Aunty Em and had no idea it had even happened!

The palliative care team came out and our paediatrician popped in for a social chat. I think we have things moving in the right direction and I feel confident we can do this at home.