Ethan's Wish

Thursday 13th - Make a Wish Party
Two volunteers from the local branch came and presented Ethan with his wish. They came with goodies for a party and presents for the kids. It was a great night. The amount of effort put into presenting his wish was amazing.
The excitement definitely kicked in from here.




Sunday 16th - Tuesday 18th
We flew to Adelaide on what has to be the bumpiest plane ride ever. We were transferred from the airport to the train station where we checked our luggage in, checked out the Indian Pacific and headed off to the city centre. Ethan was reluctant to leave the train station but with some persuasion he was soon happy enough. That night after a brief introduction to the crew we were able to board. The kids were all very excited. After a lot of who's sleeping in what room debating, it was decided a boys room and a girls room. At the start I thought this was great, I'd get sleep while Luke deals with Ethan. I didn't realise the girls would need to get up half a dozen times each to check out the fold out toilet!! So after a very restless night in the girls room, we were woken with hot chocolates and coffee from the conductor, the boys also woke to this after a solid sleep. I definitely pulled the short straw on that one. Our tickets were gold kangaroo which included our meals. The crew would come past to make sure there was something suitable on the menu the kids would eat as there was no set kiddies menu. I decided it was a good time to introduce new tastes. They did extremely well. Erin was a little upset to learn she had eaten kangaroo one of our Australian native animals she had been learning about at school.





The train stopped a couple of times. Ethan and Luke managed to get to the front of the train at Cook to see the engine and were lucky enough to sit in the drivers seat. The girls who had been catching up on sleep after their restless night couldn't get off as it started pouring! It was hard explaining to them about how rare rain is in this part of Australia.




The train also stopped at Kalgoorlie. We booked a tour of the super pit and talked up the monster trucks but when we got there behind schedule we could hardly see them. Ethan was disappointed and so were we. The second nights sleep was better than the first but the kids were still excited so it was an early start. We arrived at Perth on Tuesday morning.


Tuesday 18th
We arrived in Perth. From here we caught a cab to the car rental depot. A rental car was included. We went to Kings Park first. The kids had a ball playing and running after being couped up for a couple of days.



We then drove to our accommodation. 2 interconnecting ocean view rooms at the 5 star Rendezvous in Scarborough. Very nice!



Wednesday 19th
We went to Rottnest Island with Uncle Colin. The kids were excited about the ferry trip until they all started feeling sick half way and wanted to go home. We were sitting in a stuffy area with no breeze it wasn't very pleasant. We hired bikes and cruised around stopping for the odd swim. The ferry trip back was a lot better we got on board early and got top deck seats. The love for boats was back again. Ethan now wants to sleep on a boat!!



Thursday 20th
We went to Hillary's boat harbour. The kids did more swimming and played with Uncle Col again. After that we went back to the hotel and layed by the pool. The kids were buggered, Ethan and Adele had a sleep before tea. Ethan woke with a temperature asking to go to hospital. He was in a fair bit of pain grabbing at his chest. Half an hour after some panadol he was looking and feeling better. This is normal day stuff for us but it is a lot scarier being away from the safety zone.




Friday 21st
We met Uncle Col for breaky before he headed south to do some surfing. The kids were upset to see him go and had enjoyed the time with him. We then went into Fremantle to the Markets. The kids had their faces painted. On the way back we stopped at
Cottesloe beach.

update

Ethan stayed at Monash for 5 days on IV antibiotics. He was a lot happier and more active so we were discharged with oral antibiotics and an intense home physio plan. We got home Sunday night and by Monday night he had fevers again. I was wanting to pull my hair out, I couldn't understand why every time the IV antibiotics stopped he had temperatures and struggled. Not wanting to go back to hospital we struggled with physio, diet and the other issues associated with having fevers at home. Finally after a week the temperatures stopped and everything started to fall into place. He had a tough week at the end of a couple of tough months but he has turned the corner now.

He attended school for a few hours last week. It was great to see him have some independence and enjoy himself. It was also a great break for me!

Ethan was lucky to attended Cops 'n' Kids camp with Challenge on the weekend. I had concerns about him going but he had a one to one buddy and there is a nurse present, so overall I knew he would be well looked after. My biggest concern was that he would get fevers and we would have to drive to Sovereign Hill to pick him up, but the thought of getting sleep (even if it is for one night before going to pick him up)was far more appealing. As it turned out he didn't get sick and he had a ball for the 3 nights away and I finally got some sleep!!

Last week we had Ethan's respiratory and cardiac appointment. The respiratory doctor changed his medications a little and told me to hang in there. Overall Eth's chest is sounding better and he is improving so we are doing something right. The cardiac appointment didn't go as well. Ethan's sats are still low. The nurse recorded them at 65% and the flow through the conduit is still restricted so it appears the operation hasn't improved things and the restrictions are due to his pulmonary circulation. Not the greatest of news but there were no promises! Dr Jim also told us that he is retiring and we will see a new cardiologist at our next visit in 4 weeks. Ethan was unfazed by this when saying goodbye.

I have literally just got off the phone to Challenge. One of the camp kids has broken out in chicken pox today. It is recommended Ethan has a blood test and an injection. Not too sure how this will affect him but it does mean he can't be around any other cancer kids for 4 weeks. No playgroup or Christmas party. (Erin also attended camp and they are unsure whether she can attend the Christmas party). Another trip to hospital to get this done but at least it can be done while Erin's in getting her tonsils out tomorrow!!

pneumonia

Ethan's hb was ok, so we were discharged without the need for a blood transfusion. We were out in time for school pickup and even though Ethan didn't want to see or talk to anyone I made the trip to school. He was still in a horrible mood but when he saw Erin, he was happy as Larry. He gave her a big hug and told her he loved her. It was so cute. I was hesitant about being discharged, his sats were still low and he still had a nasty cough.

One of the first things Ethan said to me the next morning was that he wanted to go to Monash, he needed IV antibiotics and physio. I knew from that point I was in for a tough time ahead. We managed him at home with oral antibiotics, and home physio for a week until our paediatrician appointment. Ethan had decreased air entry in his right lung and crackles in his left. The paediatrician rang our respiratory doctor and we were admitted to Monash.

Ethan also has weight issues. He is on a high calorie diet because he doesn't put weight on. He manages to fall below the percentile chart every weigh in and in recent time he has lost 1kg. He is now the weight of an average 3 year old. We have been seeing the dietitian to help, but as the saying goes, "you can lead a horse to water but you can't make it drink". I know his appetite is increasing and he should be back up to the 3rd percent by Christmas.

Other issues spoken about with the paediatrician were his focal seizures. As he hasn't had anymore and we can link them to oxygen deprivation he won't be commencing anti-epileptic medication.

Palliative care services were also spoken about. The paediatrician doesn't think we need to get these involved as yet. He believes that the resistance with his blood flow and low saturations is due to the pneumonia and once that is treated he thinks Ethan will cope a lot better and we will be able to see the benefits of the latest cardiac surgery.

The plan with the Monash admission is for 5 days of IV antibiotics and intense physio sessions twice a day. We are now at the end of our stay and Ethan is a lot better. It seems the paediatrician was right. Ethan's oxygen levels are higher and he is a lot happier. It will be interesting to see how much the flow through his conduit has improved at the next cardiac appointment.

Day 15 - Home Day

Ethan has continued to improve. His temperature is still up and down, and he isn't eating or drinking properly. We believe all this is due to tonsilitis! Hopefully this is the case and when we get home he will continue to improve.

He still has a nasty cough which concerns me. His oxygen saturations are still quite low, barely reaching 70% when he is awake. Overnight they reach mid 70's. I made a bet with Dr Jim that we will be admitted with pneumonia within 3 weeks. I'm hoping this is a bet I will lose!!

He had some blood tests this morning to check his hb. This should be on the high side so if it is around 120 or below he will have a top up of blood before we go. I am hoping it is on the low side to explain the low sats.

We are unsure at this stage how much of an improvement, if any the operation has achieved. We should start to see results over the next month.

The plan is to go home and follow up with the docs in 2 and 4 weeks.

Overall, it has been a long couple of weeks but better than expected. He has surprised us all and we are going home earlier than the 3 weeks we were warned about. He is an amazing boy with more strength than anyone I know.

Day 11 and 12

Ethan is still improving. He is starting to slowly increase his diet and exercise. Yesterday he had a short trip off the ward to Franco's coffee shop across the road. He walked there with enthusiasm but quickly fell in a heap and needed to rest. His cough is still present but he is managing it better. The IV tissued and he is now on oral antibiotics. I am in two minds about this, he is too well for it to be put back in but he is not well enough for it to be left out. We are hoping he will hold his own and not develop any fevers but overall his temperatures are on the rise.

Today has been much the same. He is still improving but his temperature is on the rise. He still has noises in both sides of his lungs but is coughing better. We took him for a good walk but he struggled and was a little blue. We had a good chat to the doctor. The plan is to continue encouraging diet and fluids, physio sessions and to go home tomorrow unless he gets a temperature. If this happens an IV will be reinserted and IV antibiotics re-commenced.

This was on Tuesday, pretty ordinary here



Wednesday arvo - Grumpy here



Thursday - Starting to pick up. Red lips from a drink



Friday - Fish Fingers lunch



The Simpsons is keeping him happy...

Day 9 and 10

Day 9
Ethan continued to slowly improve. He wasn't spiking fevers but was still having the ups and downs as if he was. Walking around the ward with physio was easier. I spoke to the cardiac doctors about transferring to Monash Hospital where his respiratory team works but we have decided this is not an option at the moment. Our cardiac doctor wants us at the kids and so does his respiratory doctor!! Hopefully by the time it is an option we will be able to go home.

A Thomas balloon arrived via the post from Leisa and Adam. It cheered his day. I took this opportunity to discuss their wedding and that he wouldn't be going. He was upset but the balloon was more exciting and he quickly forgot.

Chest x-ray - still has pneumonia
Echo - all good.
Bloods - Low albumin. This is a protein which holds fluid in the vascular system so he is looking a little puffy at the moment. This should pick up as his diet does.

Day 10
In the morning yesterday he was up walking and playing. Showing more signs of his happy self. In the afternoon Aunty Mon and Uncle Marcus sat with him while we went to Leisa and Adam's wedding. From all reports I believe the big issues were with his intake and output. Hopefully we can get onto this today.

Over the last couple of days we have also had issues with him being rude to the staff. He is trying to say he's had enough and that he doesn't want them touching him but he comes out with "I don't like you", "Your stupid" or he just grunts and makes gestures at them. I have tried to teach him the appropriate words but it's difficult. I even started walking out of the room when he was not being nice and then coming back after he settled to teach him the correct words and behaviour. This seemed to work best but hard to do.

Day 8

Day 7 was a terrible day. I haven't seen him that unwell since chemotherapy/radiotherapy. It was scary not being able to do anything but just watch him lay there struggling. The doctors kept a close eye on him to see which way he would go, luckily he picked up and backed it with a great day yesterday.

The contrast between the two days was amazing. From fevers, vomiting in his sleep and not being able to wake up, to being awake all day, playing and participating in physio sessions. He amazed us all once again.

He had an episode yesterday following bath time in which his oxygen levels dropped to 43%. He was extremely blue and his work of breathing went sky high but after some oxygen and a rest he picked up and continued to play and chat. He had a chest x-ray which still shows acute changes. The antibiotics have now kicked in and are doing their job. He is getting the odd fever and his oxygen levels are up and down but overall he is managing to clear his chest and keep on the right path.

Yesterday we saw the bright, happy, cheeky boy he is. I'm sure today he will show us some more of this.

photos to follow...

Day 7

After a walk to the Play Room and back this morning, Ethan was stuffed and slept most of the day. He had temperatures of 40+, high Heart Rate and his Blood Pressure was all over the shop. He was that out of it that he slept through his daily beating by the Physio.

So overall, his worst day so far.

Ethan has now moved from a Helipad view room to an Iso room (crappy view). Jo's phone is flat at the moment so you need to ring the room phone which is 03 9345 6494

or go and visit the boy (and Jo)

Day 6

The temperature from last night didn't settle, Ethan was miserable and very lethargic. During the doctors round I was informed that yesterdays x-ray showed more changes, the respiratory team would need to review him and he would need to be monitored for another couple of days. The respiratory consult was already in the pipework so happened early this morning. They were quick with their assessment and recommendations. An IV was reinserted (this time in the back of his hand) and double antibiotics started.

Eth was febrile all day and thus struggled with everything. Physio was even harder today. He was blue and could hardly participate. We tried a walk but this also made him very cyanotic and I thought he was going to faint.

We now have concerns with his asthma. He is requiring ventolin regularly without much relief. This will be discussed in detail tomorrow. Its an endless circle, the pain relief medication interferes with his asthma, the asthma medications interfere with his heart.

Not all was doom and gloom though. During a down period after a physio session a big box was delivered. Ethan was more excited than a kid in a candy shop. He opened it to be greeted with a pile of balloons, chocolates and a teddy. He did the double fist and jumped on the bed. It was the talk of the day!!

Day 5

Sunday
- pacing wires removed
- left atrial line removed
- zipper dressing removed
- Physio
- Echo, ECG and Chest X-ray

Today was significant in that the last of the wires attached to Ethan were removed. The left atrial line, funnily enough, inserts into his left atrium. Bit weird picturing that getting yanked out, but watching it happen was like, what was the fuss about. The same with his pacing wires which attach to the outside of his heart, the worst bit for Ethan was cutting the stitches that held them in place.

Removing these set of lines meant a follow up ECG, Echo and Chest xray. All were clear from the cardiac perspective, but the x-ray shows some patchy changes in his chest.

So, physio as usual continues. Pain medication is continuing. He is slowly increasing his eating and drinking. What goes in must come out, and he finally backed one out tonight after 5 mins of eye popping straining.

The cardiac docs said on the morning round they are happy with his progress and he can go home tomorrow. But, we are not so sure, along with the Cardiac registrar, as we know his chest could be stopping this.

As I type, he now has a temperature of 38.3 which could be something to be concerned about.

Starting to get cheeky again



Pre pacing wire/atrial line removal



Post wire removal cuddle with mum



Eth, mate Jonathan and Dad looking for Choppers



Bathtime



Ethan's message to you all....

Cardiac Surgery Day 4

Things that happened today
- drip out
- started aspirin
- continuing pain management
- asthma management
- physio visits

There was more movement in the right direction today, the morning physio session had Ethan standing and taking a few steps, the afternoon session had him hitting a balloon with Erin. After tea this evening and a dose of Neurofen, Ethan walked all the way to the toy room and back.

The main concerns are still his chest - trying to keep him coughing and clearing the muck, and also pain management. There needs to be enough medication on board so he can cough relatively pain free. He was a bit wheezy today, so he had some Ventolin to assist. As a result of the drip coming out, Ethan must drink to keep his fluid levels up, so this is something to concentrate on also.


Saline nebulizer to help clear his chest



The morning physio session about to start once the wires get sorted out



Fishfingers are his favourite



Fun with the girls



Always an exciting time when a helicopter lands



Physio games with Erin



A little walk this afternoon with the Physio



Ethan's first big walk after Tea tonight

Cardiac Surgery Day 3

Pain Management and Chest Physio were the themes for today. With the morphine fully out of his system, the codeine and panadol meds were required to keep him comfortable. Ethan's pain threshold is such that it is really hard to say when he is in pain. This morning, the registrar layed down the law with the nursing staff and said follow the prescribed doses and timing, do not wait for him to ask for anything. He needs to be comfortable and pain free so that he can cough to clear his chest and to cope with the chest pounding the Physio staff give him.

The Heparin (blood thinner) was stopped this morning, and the chest drain tube removed at around lunch time - with a small dose of morphine to assist.

The afternoon Physio session was out of the bed, playing with some cars, trying to get some more movement happening, all to assist the chest.

His mood has been up and down, although it perked up when Micka (from Challenge) brought him the PSP to play with in the afternoon. This should keep him entertained over the weekend.

His sats for the day were a bit up and down also, hence the mask this morning after Physio.





Physio - hard but necessary









Thanks to Challenge for the loan of the PSP

Cardiac Surgery Day 2

Ethan had a long night fighting the ventilator, literally trying to physically remove it. To combat this they used a stack of morphine, midazolam and arm splints. He also had more issues with his blood pressure, this time it had gone too high. They started more medication to lower it.

Finally at 6am they decided to remove the ventilator. Probably based on the fact that Ethan had already moved it. He was breathing on his own but requiring a lot of oxygen. After a long night he finally looked comfortable. The plan was to remove some more tubes, start physio and move up to the 7th floor.

Ethan had a couple of lines removed, one from his neck, and arm. They took a while to stop bleeding due to the blood thinning medication but they finally stopped. However half an hour later when Ethan had a cough, blood shot out of his neck nearly shooting the nurse in the eye. The nurse laughed, saying it was like a scene out of a Monty Python movie. The blood thinning medication was put on hold for a couple of hours. He needs to be on blood thinners to aid flow through the conduit but not so much he bleeds uncontrollably. He was able to down half an icy-pole before noon.

He went up to the Cardiac ward at 12:30pm, about 24 hours post surgery which was above expectations.

Ethan wasn't too compliant with physio, the high doses of morphine made it impossible for him to wake up to blow the bubbles. Physio is even more important to Ethan because of his lung disease, so chest percussions it was. It looked very painful and sounded worse but Ethan tolerated the pounding well.

His Oxygen wasn't put back on after physio as his sats were about 80%, and he stayed like this for the rest of the day and evening. He is now a good pink colour. This time was also spent sleeping. We woke him up at around 6pm and he ate another icy-pole. His ears perked up when he heard another kid playing his favourite Simpsons game. He was a bit happier, but soon went off to sleep again.

Earlier this morning, a couple of hours after the Ventilator was removed



The icy-pole was good medicine for his sore throat post extubation



Now up on the ward, sleeping off the morphine - 3 times the usual amount



This last one was at 6:30pm tonight, he was fairly relaxed, sussing things out. He had half an icy pole and a bit of jelly, then it was lights out again.

Cardiac Surgery Day 1

We woke early and dosed Eth up on Ventolin as ordered, so much so he was still hyperactive after the sedative pre-meds. He was very excited about the planned hospital stay. He gave the arms up, “yeah!” chant.

He was first on the surgery list so it was straight into it at 8am which was good. We received the call at 12:30 to say all went well and we could see him in ICU in 45mins. This was slightly quicker than the earlier estimate on surgery time. On arrival to ICU we were told to wait and finally 2 hours after the initial call, we were allowed in.

The walk down the corridor into the room was awful. He was swollen with tubes and doctors everywhere. I had forgotten how horrible it was. The solution used to stop his heart in theatre is high in potassium, they had to use a lot of this and his bloods were showing it. He had to have some medication to excrete it. His blood pressure was low so they tried to override his normal heart conduction with pacing but it sent him into an abnormal heart rhythm. The plan was to then pump him with fluid and blood products and give him blood pressure medication. The problem was that the medication he had to help excrete the potassium was making him excrete the fluid. It took a while but finally the blood pressure was under control.

The next issue to be looked at was the ventilator which was detecting his heart rate as a breath and pumping air into him creating a battle. Nervously I watched as they changed his ventilator. There had to be a lot of trust in the Dr who was manually giving him oxygen. Every time he spoke I thought ‘just count his breaths’.

He also had an issue with his temp. This can be because going on (heart/lung) bypass makes an inflammatory response and raises the temperature or it could be a chest infection? The million dollar question.

It was a long afternoon and night


A quick ride on Scoop before sign in at Admissions



Battling with the PC version of The Simpsons Hit and Run in the Pre Surgical waiting room.



On the good stuff - Midazolam - in the Pre-Op Holding Area



Ethan connected to the Ventilator, Monitoring, Drips, Drugs, Drain Tubes, Conducting wires and other stuff.







Version 2 of the Ventilator.