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.

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.

Home Time

The medications in the morphine pump were altered yesterday and 2 more drugs for nausea and pain were commenced. This combination seems to mask things for him as he was a lot happier. He had times of being cheeky and playing with his new Zurg. It is good to see and helps lighten the situation.

Ethan is still not eating and drinking. He looks very skinny and weak. Hopefully over the next few days with the new medicines he will start taking more orally, but I'm not holding my breath.

The urine retention is not an issue when there is nothing to wee! If he starts drinking more and this becomes an issue we have a few passive things to try like warm baths, but if things don't flow, he will need a catheter inserted.

The plan is to go home today and spend as much quality time with our little man before things deteriorate even more. We are taking a drug box home with 1st and 2nd line drugs in it to combat any issues that may arise.

Lego Zurg

Ethan having fun with his new Lego Zurg

Restless and irritable

Ethan has remained restless and irritable with some cheeky happy moments. The pain management could be better as he has required 5 oral doses of morphine in the last 24 hours. I am hoping this doesn't interfere with the plan to go home...

This morning Eth's line and needle site needed to be changed. He handled it better than I thought, but sadly it's because he doesn't have the energy to kick and scream. I decided not to put the numbing cream on his belly as this draws attention to what is about to happen and the anxiety associated with that is unbearable. No warning, straight in.

He is very clingy and needs to be close. He is sleeping that lightly that if I move he wakes. Last night I got up to go to the toilet and when I came back he was gone. He managed to get himself to the nurses desk looking for me. He was confused when he got there and couldn't explain why he was there. When he saw me he just sobbed.

Some changes have been made to the morphine infusion. Hopefully this will help reduce his irritability. We are waiting for the doctors to come and discuss the plan.

Weekend Update

Ethan had a slow start to yesterday. He needed some oral morphine in the morning and then slept until 1:30. Waking on and off briefly. The morphine helped and he had a happier afternoon.

Ethan is more sensitive to noise and light now. At one stage he kicked us out of the room for talking to loud! This was a good time to grab a drink and sit in the sun. But more importantly it is good to know that when he is tired and needing a break he will let us know.

Last night we had planned a dinner party with a few friends but as we were still in hospital the party was moved to the ward. Ethan loved it. His footy idol, Brighty, came in with Balloons and his 'cousins' came. He socialised in between resting and again he told us when he had had enough. He had a great night and it was well worth the organisation. Over night he slept solidly for a few hours but was mostly restless and irritable. He needed 2 doses of oral morphine which didn't seem to do a great deal.

The big issues from today are that Ethan is now having trouble weeing. This could be a side effect of the morphine. It took over an hour today to go. At the start it didn't seem to bother him but now he is starting to get annoyed. He has also been nauseated today and has vomited. Restlessness and irritability have also been big issues. Hopefully the main docs will have some answers on how to treat these best.

The plan is to still go home tomorrow with the palliative care team. Ethan is busting to get home. (and to school!). Don't think that will be happening but it's good to have hope. South East Palliative Care will monitor us closely in the home.

Thank you to all of Eth's visitors. Ethan is a very social boy and it keeps some 'normality' for him. I know it is hard for all especially when he is up and down, just like it is hard for us but know he is happy you are making the effort and we hope to see you at home soon..

Admission Photos

 

 

 

 

Uncertainty

Overall Ethan was a lot happier and more alert yesterday. He started the day in pain which led to the morphine infusion being increased. This increase seems to be the right dose to manage his pain as he is showing signs of his usual cheekiness; calling the doctors losers and smacking the nurses on the butt!

Ethan had a lot of visitors yesterday. He loved it. He was extremely exhausted last night sobbing to get to sleep but he had a great day. It was good to see him interacting and happy. Ethan is very social so even though he was exhausted at the end of the day he wouldn't want it any other way. If you want to visit please don't stay away because he is tired, he loves visitors, he always has and it is 'normal' for him.

We have had many people ask whether they should come to see him, they don't want to miss the chance to say goodbye etc. We can not answer this question. We don't know when Ethan will pass away. We have a lot of uncertainty about Ethan's future. This is a decision everyone has to make for themselves. If this is a thought that has entered your mind, here are some facts to think about..

We know Ethan has deteriorated. His cardiac function is under a lot of pressure and his body and main organs aren't getting adequate oxygen. He is getting chest pain because his heart isn't getting enough oxygen, headaches because his brain isn't getting enough oxygen. He could pass away suddenly from a seizure or heart attack. To add to this he has the extra demand of infection, will he cope better when the infection goes, maybe, maybe not. If yes, the disease is still progressing and we aren't in winter yet. Any infection could tip the balance.

He could potentially pass away with the next walk to the toilet or he could slowly start to deteriorate. He is sleeping more because his brain isn't getting enough oxygen, the window period of being alert and awake may slowly decrease. He may become more confused and disorientated. It could be a slow progression over the next few months. The answer is the doctors don't know, we don't know. He could pass away today, tomorrow, next week, next month, in 6 months, we don't know.

We do know life as he knew it has changed. He is in pain, sleeping more and showing signs of confusion. The ability to pick up and go has changed. He won't be going to school 5 days a week. We will be nursed at home under the supervision of the palliative care team. He is happy and cheeky when the pain is under control. This is an uncertain time for us all.

We spoke to the girls last night again. It was hard. No 6 or 9 year old should have to try and understand. It's hard enough for us adults. I'm continually amazed be their strength and insight. We are lucky to have 2 beautiful, bright girls.

Thanks for all the messages and support.

Chest Infection

After walking into the mess and pain of yesterday morning I decided to stay last night. In the evening he remained restless. No major pain but irritable and looking like he was going to vomit. He wasn't the 'normal' Eth. He finally fell asleep and remained restless, tossing and turning most of the night. We had a few problems with the morphine infusion during the night so he woke in pain needing more oral morphine. This seemed to settle him well but then he started vomiting. This took a lot out of him.

The doctors came to assess him a couple of times today. It was decided to take a chest x-ray as his chest was now noisy. The x-ray showed a small patch of infection in the right side of his lungs. Not a big deal in a healthy person but as he is so compromised it could be some source of his pain. He has been started on oral antibiotics for this. If he spikes a temperature we will have to have discussions about further treatment.

He slept on and off during the morning. He was interactive with his talking but not his happy playful self. He then had a good sleep and woke a bit more playful. He had about an hour of being cheeky before he became irritable and in pain again. He finally went back to sleep when his pain was under control; 2 doses of oral morphine. He has remained asleep since then.

We are not sure if he was starting to get an infection (which didn't show up in initial tests) and thats why he has deteriorated or if he is getting infections now because he is so compromised with his cardiac function. What comes first the chicken or the egg? The answer doesn't really matter, treatment is still the same.

I am still hoping tomorrow will be a better day...

Lack of O2

Yesterday when Jo and I got to the ward, Ethan had just woken up in extreme pain, crying and writhing over the bed. The nurses had been trying to give him an oral dose of morphine, but he wouldn't take it. Jo then forced him to take it. He continued to be agitated and unsettled until the morphine kicked in, then he fell asleep.

While asleep, we had a more constructive chat to his Cardiologist than previous ones. They tend to waffle on at a high level without letting go some of the details, so i think my frustration with them to the other doc's finally got them to give us the details we thought we wanted.

In summary, it's Ethan's lack of oxygen supply (hypoxia) that is giving him the most pain. He is having headaches, leg aches, chest pain, stomach pain and pain in other places that he doesn't even tell us about. Obviously, this is all due to the dodgy heart plumbing he was born with. The 3 open heart surgeries he had were to improve blood flow and oxygen delivery, which partly worked, but this led to Pulmonary Hypertension which is not recoverable from. The Sildenafil drug helped with the hypertension for a while, but the hypertension still progressed, and the benefit of Sildenafil wore off, even after increasing to the maximum acceptable level. So he is in the state he is in now.

We were wanting some way to track/plot his deterioration with tests that aren't too invasive, and the Cardiologist's said we can do whatever we think is necessary. The problem is, there is no point in doing them because they will not be able to obtain measurable differences. The best thing we could do is the 6 min walk test, but there is no way he could do that now.

So the focus has become pain control and trying to find the right balance so he is not out of it from pain or out of it from too much morphine.

When he woke around lunch time, he was quite sleepy and took a while to wake properly. During the afternoon, he never got to the cheeky moments he showed on Tuesday evening. We had a few visitors which were some distraction for him, but overall, he still seemed to be feeling the pain and wasn't his usual self.

heart disease progression

Ethan was excited about starting school. He had had a couple of months off so was ready to go back and see all his friends and teachers. Everything was ready; his lunch was made, bag was packed. But during the night he developed a temperature. I gave him some more panadol but it didn't seem to help. By the morning he was also in a lot of pain and his breathing was erratic. I decided to take him to Monash for IV antibiotics. I spoke to the Oncology team who admitted us into the Childrens Cancer Centre rather than waiting in emergency. They quickly did a chest xray to find his lungs showed no signs of pneumonia. This was not what I wanted to hear. He had chest pain, fever, fast breathing and coughing but his lungs were clear. The doctors informed me his heart disease had progressed and that they needed to insert a pump for pain relief. It was devastating. I always knew one day I would be told that and I had tried to prepare myself but no logic and understanding of his palliative condition could have stopped the aching I felt.

I wanted to ring Luke but I couldn't talk. I eventually built up the strength to mumble it's not good, it's his heart, come. By this stage Ethan wasn't moving, just laying there stiffly making a horrible breathing sound. A relaxant was added to his pump to help. During the admission Ethan also had some blood taken. The blood tests didn't show us anything. There was no underlying infection or inflammation.

The next few hours are a bit of a blur of pain control and crying. I wanted to ring people but couldn't. I didn't know what to say. There were questions to be answered and I didn't have the answers. Why should he have to suffer with this and why should the girls have to watch their brother die. I couldn't think of anything else. I eventually rang the grandparents. Not easy.

The next day I managed to start telling people but we still didn't know what and why. So we didn't know what to tell people. Since then we have had doctor meetings and doctor meetings, information and more information but it doesn't matter what they say, it sucks. We know there is nothing they can do to help other than pain control, we know it is getting worse and that one day he will die but there is still a big question mark as to how and when. No one knows.

We are all coping ok. It is harder to deal with when he is lying there not moving and crying but when he is break dancing on the floor and smacking the nurses on the arse, you have a big laugh.

We will be in hospital until the pain is under control.

happy times

The end of 2009 was challenging but also very rewarding..

Ethan missed the last few weeks of school. He was taken to Monash for assessment and pneumonia was diagnosed. We decided to go home on oral antibiotics rather than an admission for IV therapy. It was tough at home but it worked. The fevers stopped and the home physio was productive.

A major highlight leading into Christmas for Ethan was receiving his own number 9 Yarragon footy jumper. He barracks for Yarragon especially his mate Brighty. It brought a major smile to his face and confusion to people when they ask, "Who do you barrack for?" and he replies, "Yarragon, my friend Brighty plays for them".

By the time Christmas came Ethan was asking to go back to school, he had already missed a month! Ethan loved Christmas. He loved opening the presents and catching up with family. Ethan was pretty miserable and exhausted by the end of the celebrations and it took some time to recover but we all had a ball and it was worth it.

Ethan spent the New Year at Very Special Kids. He stayed there for 5 nights. Luke and us girls went to the Grampians to do some hiking and activities that we can't do with Ethan. It was bitter sweet for me. I loved being away and seeing the girls accomplish things but at the same time it was hard being away as a family of 4 and seeing in the new year without Ethan, especially when the mind wondered to the fact he may not be here next new year. When we got back to VSK this was quickly forgotten as he had had a ball. He loved it.

On the 16th Ethan turned 8. His birthday lasted a week! We celebrated early because Erin was going on camp, we then caught up with friends over the next few days, followed by family. He was happy during this period. It was great to see the excitement on his face.

During the holidays we also had a few outings. We went to the aquarium with Anna and Molly. Ethan loved catching the train and seeing the sharks. He did however crap himself with the spider crab! Funniest thing ever. We also went to Gumbuya Park. Eth had a ride on the cars and tried to play 18 holes of mini golf but he couldn't last the distance. Maybe we need a buggy next time!