drowsiness

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.

Satdy

Overall, friday night was a pretty good night, Ethan got up a couple of times for the toilet, but otherwise slept. He was up at around 9am this morning and in a decent mood for most of the morning, he even chatted to the SEPC Nurse instead of telling her to piss off. But as the day wore on, Ethan started going a bit crazy, 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. This cycle continued until he started coughing up blood again and then collapsing on the ground because his legs had given way.

He was a struggle to deal with. At one point he was trying to cough up the blood in his chest, but seemed unable to, his eyes rolled back into his head, but then he eventually did a big cough. His chest still sounded gurgly. It was basically a repeat of yesterday afternoon.

Even though he was totally knackered, had extra morphine and midaz on board, he was still fighting going to sleep after this. We ended up darkening the room, telling him it was night time and sending him to bed. And he did finally go to sleep at about 6pm. Phew!

Not looking good for tomorrow, if this pattern continues, but no-one said this was going to be easy.

leg trouble

The haloperidol was increased to 1mg yesterday. This seemed to take the edge off the mood swings. He seemed more content between the ups and downs. Things seemed to be better but then today happened.

The nurses came and they noted he was more settled. They came with a drug order in case Ethan has a catastrophic bleed. We have this drawn up ready to go just in case. It's a horrible scenario and I'm hoping it doesn't happen. The nurses had barely closed the door when things went pear shaped. He lost the ability to use his right leg. He was staggering in circles and crawling on the floor. When he did have the ability to walk his leg would give way and he'd end up the floor. This happened several times this afternoon. He then started having trouble going to the toilet. He was getting very agitated and angry. During all of toilet visits he started coughing blood. I'm not too sure what happened next but he seemed to forget how to cough, swallow and smile. He had a mouthful of blood which I had to scoop out. He sounded horrible. I wasn't sure what to do, what medications to give etc. I made a few phone calls to the palliative care team who were supportive. We finally got on top of things and he is now fast asleep. I wish and hope nothing like this will ever happen again but chances are they will.

I'm hoping all the extra medicine will help him sleep all night but I have this feeling he'll need to go to the toilet.

dexamethasone

The doctors came out to the house yesterday to review Ethan. It was decided to keep all dosages the same. I'm not too sure how effective the haloperidol is. He seemed a bit happier yesterday but he also had a really good sleep the night before. He still had episodes of yelling and screaming but got over them quicker. I am hoping this is the effect of the new medicine and today will only get better.

He is still spending his days watching DVD's. He likes to forward them to the funny bits and then rewind them to the funny bits. Finding Nemo was played backwards yesterday. He demands someone sit with him while he does this until Uncle Colin gets home and then it's his turn until bed time.

He is still coughing blood. These coughing fits are happening more often. There is nothing we can do other than sit and comfort him and hope the next cough doesn't produce a massive amount of blood. There was some talk about changing antibiotics as infection can cause him to cough blood, but with no other signs or symptoms this seems very unlikely. The most likely cause, and the one we believe to be true, is that the increased pressure in his pulmonary artery is causing the blood vessels in his lungs to burst. We have dark towels strategically placed around the house so that when blood does splatter out it doesn't scare him or the girls. Blood on white stuff always looks like more than it is.

The needle sites were lasting a week but now we are lucky to get 2 days from them. We are trialling a small amount of dexamethasone inserted into the cannula to see if this will prolong the site. This works well with the elderly but the doses aren't as high. Fingers crossed this works. Changing the needle is horrible. He gets so worked up during it, putting a lot of pressure on his heart.

The girls have their moments. Sometimes good, sometimes bad. We have had a counselor come and visit them. They liked her visit but she didn't get much from them. They both expressed trouble talking with friends. The last time Lucy came the girls were very open. She is coming back again so I'm hoping it will be more productive next time.

haloperidol

Ethan had the Dr review at Monash as planned. After many discussions between 4 different units, it was decided to keep the morphine and midazolam at the current dosage and add haloperidol. This wasn't a decision taken lightly as haloperidol has major cardiac effects. It has been commenced at a low dose and can be increased if needed. Yesterday afternoon was again very trying and he required breakthrough medicine last night but he has since slept very well for him. It'll be interesting how today goes.

We have had a lot of people ask us whether he is in hospital or home. We have decided to nurse him at home until he passes away. If we wanted him in hospital we would still be there from our admission in January. Any review at Monash is just that, a review and home again. It is easier going to Monash instead of the GP and paediatrician etc as it gets done in one go rather than the running around between doctors and the chemist and then waiting on nurses to come etc.

haemoptysis

Ethan was awake all day yesterday. He was exhausted and his behaviour was all over the place. He yells and screams and wants you to sit with him one minute and then he's telling you to bugger off the next. He gets very angry and slams doors and throws things. It was a long afternoon. I was hoping he would have a good sleep and sleep most of the morning but he was up a few times and he woke early this morning.

By lunch time the same pattern of behaviour had started. It was horrible. Uncle Colin was flying back and I stupidly offered for him to go to the airport. He said yes and about 5 minutes later I was regretting opening my mouth. We loaded the car and set on our way. A minute into the trip I was going to turn around and take him home. He was confused and crying but it seemed he would fall asleep. He fell asleep 10mins into the trip. Finally he could get some rest but 2mins later he was wide awake. When we got home he spent 3 hours yelling at me. Telling me he hates me, that I'm stupid, go away, come here etc. I'm not too sure what they can do for this but something has to be done or we'll all end up at a loony bin. He has had 3 extra midaz break throughs this arvo and he was still up yelling at me. I was pulling my hair out. He has also had a major coughing fit this evening and is now coughing small amounts of blood. Lets hope this doesn't get worse. He finally fell asleep exhausted at about 7:30.

I paged the palliative care nurses. After discussing the issues with the Dr, we have a plan. Hopefully Ethan has a settled night and we will go to Monash tomorrow morning for a review and a change in pump medication. If he is unsettled we are to give morphine and midaz. Hopefully that will get on top of things until the morning. If not we will be going to Monash overnight.

Hopefully this upcoming review will get on top of things. I'm not to sure how long I can keep going like this. It is taking it's toll on all of us.

Still fighting

Over the last couple of days Ethan has been extremely restless and agitated. The pump has been increased to 40mg of midazolam to help ease this. (The morphine has remained the same). These doses are extremely high, especially when you add the break through doses. A lot of adults don't handle these levels but Ethan is still up fighting. His strength is amazing. He was awake a lot last night. I couldn't believe it, after a total of 50mg of Midazolam he wanted to play. I didn't appreciate the car and tractor noises on the side of the bed! He was then up to the toilet constantly. When he finally got to sleep, I thought he would sleep all morning but he was up early. By lunch however he was completely buggered and has rested and slept the day away.

We are now on top of his toileting trouble but he has developed fluid retention. His abdomen and torso are very tight and his little ankles and wrists are showing signs of swelling. His diuretics have been increased to help ease some of this pressure but it hasn't helped.

Toilet Trouble

Ethan had the needle site changed yesterday. This is now positioned in his right arm. He has had a few changes since the syringe started. His stomach has big red inflamed lumps and so it has been moved to his arm. Originally they were lasting a week but now with the increase in meds they are only lasting a couple of days. The pump is now at 50mg morphine with 7mg breakthroughs and 27mg midazolam with 5mg breakthroughs.

He slept a lot yesterday and when he was awake he was irritable and very demanding. He jumps from thing to thing and can't focus. Lucky for us we had a few visitors to help sit with him. This is the trend with all awake time now. This plays havoc on the girls.

Toilet time is now a big issue. He can spend hours trying to wee and can't poo. Morphine causes urine retention. He can spend hours in the ensuite trying to wee. He can no longer stand for long periods so ends up sitting, but then falls asleep. We have tried everything. Luckily for us he has always managed to go before a catheter is needed. We hope this continues. Morphine also causes constipation. Ethan has had a lot of trouble with this as well. When he finally gets the urge to go he pushes until he falls asleep. Lastnight I spent hours in the bathroom waking him up, telling him to push. I think at one stage we were both asleep in the ensuite! It was a shocker of a night based around trying to wee and poo.

Today Eth's class come for a visit on the bus. Ethan was excited. He even got on the bus and went to the Rocket Park with them. I drove behind just in case. He lasted 35-45 mins before he was completely buggered and had to come home. He had a ball with his friends but we paid for it for the rest of the day. He was a very angry and upset for the remainder of the day.

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.