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.