Pix

 

 

 

Sleepy

Ethan didn't have a great day yesterday (Sun). He was irritable and cranky. He required 3 breakthroughs, so the SEPC Nurse increased the syringe driver to 50mg of Morphine today. Midaz was kept the same. The breakthrough doses have been increased to 7mg.

He has slept all day so far and this may continue for a couple of days so he can catch up on lost sleep.

Hopefully we can again get on top of his pain.

Uncle Colin

Uncle Colin arrived on Thursday night. Ethan had been asking for him to fly home for a couple of weeks. He was so excited so even though Colin wasn't getting to Narre until about 11pm, Ethan forced himself to stay awake. He managed to mumble a hello and then fell asleep. Friday morning he was up and showing off. I hadn't seen Eth put on such a show for a long time. It was great to see.

We had the nurses and Dr come out to the house yesterday because he had required a few break throughs and is now sweating a lot. They decided to increase the syringe driver and commence antibiotics. The morphine was increased by 10mg and the midazolam by 4mg. This is the biggest increase so far. He was also commenced on a treatment dose of antibiotics just in case he is brewing an infection.

I don't know if it was the hike in medicine or just having Uncle Col here but yesterday was a happier day. He still hit the wall and needed a huge day sleep and there were some teary episodes but overall his wake periods were brighter and cheekier. He even had some time to play with his 2 little friends.

I would like to say a special thanks to Sal and Paula. I knew I had every right to be suspicious about your lunch visit. Even though I was laughing at Poppy Syd the pampering was very relaxing. Thank you.

Pain

The last 2 days have been horrible. Ethan has been very irritable, confused, and in constant pain. This deterioration lead to a morphine increase. The pump dose was increased by 8mg and the break through doses increased by 2mg. The pain remains constant despite this. We still have little window periods of happy moments. He chuckles at the funny sections in movies and gets carried away licking people like 'Stevie' in Madagascar 2. But overall he remains irritable, confused and in constant pain. He is also sleeping more. He is waking later and sleeping during the day. Getting around the house is more of an effort. He struggles with energy.

The girls have their moments. Erin is carrying a lot on her shoulders. She speaks openly about what is happening to Ethan with her friends, teachers and us. She is lucky that her friends have grown up around us and know Ethan and our situation. They are at an age where they can be empathetic. Adele however is having a lot of trouble with her friends and communicating to them. "They don't understand, they don't love Ethan, they don't care". It's very hard. Her teacher is very aware of the situation and is a great support. She is dealing with a lot more than most 6 year olds. She has been through so much that sometimes I forget she is only 6. Both girls have had to grow up fast.

Photos still to come. Have had trouble uploading them. Ethan doesn't like his photo being taken anymore so there's only a few.

Headaches

I never got around to putting the photos up, Sorry.

We have had a few big days. We said goodbye to Aunty Em on Saturday. It was great spending time together even under such awful circumstances. To make a positive from something negative, Emma and I have a stronger bond now and for that I am greatful. Erin and Adele were very emotional. They loved Aunty Em being here. Erin was visibly upset when Emma was leaving but Adele, the little tough nut held it together until the car drove off. She then howled. It was hard seeing them so upset but pleasing at the same time; Emma's trip did exactly what we wanted it too. Ethan was fine saying goodbye but he has been asking for her a lot since and he gets upset when I say she's in London. Apparently he hates London! I should have told him she was in New York because he's catching the boat there tomorrow!!!!

Ethan has still been getting bad headaches. It is very hard to control and he becomes quite agitated with them after a while. The lack of oxygen causing them is also leading to major confusion and irrational conversations. He then becomes more agitated because you don't understand him. He is also getting intermittent chest pain. The pump has been increased and I am guessing it will be increased again over the next couple of days as the pain is becoming a bigger issue.

I was talking to the girls tonight in detail about the disease progression and what and how things could happen. Erin said, "If we know he's going to die and he's in pain, why can't we drug him so it doesn't go on causing pain?" I then explained only vets can do that. She has strong views for a 9 year old.

The respite worker, Amy, who we met before Ethan deteriorated came on Monday night. She isn't qualified to give the medicines but Ethan formed an instant bond with her and had asked for her so it was organised. She watched 10 mins of about 10 movies with Ethan while I pottered around cleaning and getting tea cooked for the swimmers. It was good doing the things I normally do, but sad that housework could bring me joy!

The Childrens Palliative Care team are going to fund the air mattress and also a nurse to come out to the house a couple of nights a week so I can get out and be with the girls. I'm not too sure how long this will take to get up and running but we are looking forward to it.

School Visitors

It seems like forever ago that I updated the blog but it's only been 3 days.

Ethan was restless on Tuesday night. He was still sleeping but agitated and kicking his legs a lot. At one point he moved the pump and I heard a rattle. The syringe had come out of the driver and the tubing was disconnected. We don't know how long the pump was disconnected but after a few boluses he seemed happy again but it was the start to a long day. Wednesday was up and down. Happy one minute, in pain the next. A few break throughs were required however the pump remained at the same levels.

It is such a balancing act to keep him pain free and comfortable without causing drowsiness. At one point yesterday his speech was very hard to understand. I was having trouble translating for him. It was a very difficult and frustrating situation.

Ethan fills his day with DVD's and PS3. He demands someone to sit with him while watching DVD's and then he forwards to the funny bits. I don't think Aunty Em has seen a movie from start to end yet. I'm not too sure how I will cope with this after Em has gone back to England.

Today one of Ethan's school bus drivers and supervisor came as well as his current teachers. He loved it. They all brought goodies which have been a real hit. We spent sometime this afternoon completing a solar system puzzle and reading a Cars book. Thanks guys. He is tired now but it is worth seeing him so happy even if it is for a little bit.

I will try and put some photos on later.

Syringe Driver Control

After the bad day on Saturday the syringe driver medications were upped. A huge improvement. He was happier and not as agitated during the day. It was nice to see some usual Ethan antics shine through. We weren't so lucky Sunday night. He was restless and agitated. Break through doses were required from about 4am. It was a long night but the medication worked and he was happy playing play station again in the morning. The syringe driver medications were increased again and the needle sited was changed. This combination seems to have done the trick with controlling the pain and agitation. He was a lot brighter and interactive yesterday. Fingers crossed he can hold off another deterioration and be comfortable like this for a while...

The girls are coping extremely well considering what is happening. Erin uses the avoidance technique a bit, using any excuse to get out of the house. She is a lot happier when Ethan is comfortable and not confused. They have a really strong bond so when Ethan is telling her to go away it is very heart breaking. She is talking about the past a lot and reminiscing. She is also questioning peoples behaviour. "Why are people doing this now when he's always been sick?!" She is very frustrated.

Adele is moody towards me but is otherwise nice as pie to everyone else. Having Aunty Em here is a good distraction. When Eth is not himself Adele follows Em like a little lost puppy but when Eth is happy she is there taking advantage of every window period of 'normal' Eth. She is a strong little girl.

The girls put in an application to Little Dreamers a while ago. Little Dreamers is a company that grants siblings or young carers dreams. We weren't too sure as to how long this would take or if their dreams would be accepted etc but it should go ahead. We will hopefully hear more by the end o the week. I haven't mentioned it the girls. Hopefully we can surprise them.

Hospital Pix

 

 

 

Confusion

Ethan has had a bad day today. He has been cranky and miserable and very confused all day. The break through injections have done nothing. It's been a long day...

Some examples of Ethan's confusion;

"Mum, I'm hungry. I wan't chips" You get them and he says "I'm not hungry, no, go away, I'm full"

"Hello Erin" and then when Erin says hi back. Ethan says, "Urgh, Don't speak to me"

"Mum, come here" You get there and he says, "Go away" waving his hand for you to piss off, so you start to go and he says "stay here, I'm hungry" and it starts all over again.

"I don't like you, you're mean. Mum, I love you"

It's doing my head in. I'm like a yo yo around him. I've accepted he has this shit heart condition and that he will deteriorate and die but why does he have to be a different boy in the process?!

The grandparents came down today. They bought goodies for the freezer and tidied up around the house. It is a huge improvement. Thanks heaps oldies.

Visitors

We are finally settling back into home life. Ethan is getting himself from place to place around the home and is a little independent at times however most of the time he is demanding and requiring one on one attention.

We are lucky to have had Aunty Fi come for a few days while we were in hospital and Aunty Em is here for a couple of weeks to help with the girls while we try and settle in. Both Aunts have been a huge support. Thanks girls.

I usually never stop, always out and about from one thing to another. Having Ethan home has changed this. I am now restricted to how far I can go and when I can go. Lucky for us we have had heaps of friends visit so this hasn't had a huge impact as yet. I know people are worried that it is causing me to be more tired, I won't lie it is but if you weren't coming I'd most likely be lying on the bed depressed, sooking and moaning that I have no friends that care. I'd much prefer to be tired at the end of the day after seeing my friends. I'd also like to thank everyone who has sent messages of support.

I have managed to get some general 'house keeping' stuff done. The nurses are coming daily to change the syringe but it is up to us to make sure we have all the medicines. We found out one of the injections is not covered with Ethan's health care card so I spent some time chasing a loop hole to get around this. Luckily for us, the oncology team will cover it. I have also had the oxygen machine serviced as it is getting a bit more use now. We've filled out centrelink forms, not an easy thing to do on the best of days but when your tired they are a lot worse. Poor Luke copped the anger of that. We are waiting on a referral within palliative care for the air mattress as funding on this only lasts 30 days. We have rearranged respite as we now need a qualified carer. The palliative care team can provide someone in business hours only, so Sharon our care nurse is looking into this. Our case manager is organising a lawn mower to come as well as some volunteers to help out if we need them.

Ethan slept from 7:30 last night until 12:30 today. He woke very puffy and swollen but was refreshed and had a good afternoon. He was sore and irritable at times but seemed to recover himself with no need for intervention. He has also managed some food today. Not as much as normal but a lot more then recent times. Tonight we had cousin Shane come (and Nanny Judy and cousin Tara) Ethan put on the cheeky boy act. He was showing off trying to do handstands, and dancing. It was very funny. He was still confused jumping from thing to thing but he was happy so it was bearable and quite funny. He did fall in a heap and have some break through but it was still good to see some spark. I can't remember the last time I saw such spark.

Overall he had a pretty good day and I feel I have achieved some things.