After holding off as long as possible and trying everything at home Ethan has landed another admission at MMC. A chest xray revealed changes on both sides, bilateral pneumonia. The plan is for a week of antibiotics and physiotherapy.
He is happy as Larry to be there. As soon as we entered Monash he had more spring in his step. He told Dr David he needed to stay and was happy when he agreed. He loves it that much that when he was being uncooperative the other day Dr David threatened to send him home! He soon changed his tune and was cooperating again.
While we are there the cardiologist is increasing his sildenafil. So far so good. His blood pressure and sats haven't dropped and he isn't complaining about dizziness, headaches etc.
We spend most of the time playing starwars with our balloon light sabres! The staff are droids, Ethan is Obi-wan and I'm Quigon. The staff cop a belting but they don't seem to mind too much! When we are not playing star wars we are helping out the doctors with practice for their exams. Ethan doesn't mind the extra attention!
Tomorrow is Erin's birthday, another family birthday in hospital. Luckily we had her sleep over party last week!
Friday, May 30, 2008
Monday, May 12, 2008
progress report
Sorry to all those regulars waiting patiently for an update...
Ethan commenced the drug sildenafil on the 2nd April. I had forgotten how scary and nerve wracking new things are. The staff discussed all the side effects and scenarios and went about their business. They started with an early dose so that if something went wrong there was an abundance of staff, luckily for us everything seemed to run smoothly. During the admission Erin was very unwell. We couldn't keep her awake. Ethan also managed to come down with this bug. Very hard to monitor him when you can't wake him! The docs were happy that all limits were fine and that sleeping isn't linked to the drug. It was the subjective things we couldn't monitor like blurred vision, headaches, dizziness, pins and needles. We just had to hope that when he woke he was comfortable. The sildenafil has not made him worse and it hasn't made any difference to his daily life but on average his sats are sitting a little higher which means nothing if he can't walk or do anything anyway. During this admission Adele turned 5. Another family birthday celebrated in hospital..
Ethan has also had a chest CT which shows he does not have bronchiectesis. It was a mixed appointment. I should have been very happy. A good report but we have been treating him with tune ups for years and he is symptomatic of it. I asked if there was a mix up with the results. Dr Armstrong was also suprised and despite the good report Ethan still needs nebulisers and physio sessions twice a day. So does the report mean anything to our management, no.
Ethan has also had a month of cardiac monitoring. A few rhythm changes were detected but not enough to worry about, which indicated his fainting episodes are from the pulmonary hypertension. He hasn't had any more fainting episodes but he doesn't push himself and is not as active as he used to be.
We are currently in the process of applying for funding for a wheelchair. The wheelchair is measured and made specifically for him with oxygen basket and tray etc. We were told originally this could take up to a year but luckily for us there was a cancellation and our report said urgent. We got in within a couple of weeks and the chair has been ordered. The hospital funds a few thousand and we pay the out of pocket expense of about $1500. This will be a great help when it arrives.
We had a paediatrician apointment a few weeks ago. I spoke to them about Ethan's sleeping, well lack of sleeping. I was hoping to drug him at night so that I could get more than 1 hour at a time but this is not an option at the moment and we are trying new things to help him feel more at ease. Hopefully something will work. On a better note he has grown and put on weight.
Ethan is currently unwell and has been for a month. The usual coughing, running nose, perforated ears etc. He is unpredictable. Sometimes he lasts a full day at school and other days I have to pick him up early. It is very hard to plan things. I have had numerous times where I've had to stop and go and other times I don't go out because I think he'll need to be picked up and he's fine. I sent him to school today so that I could attend a school excursion with Erin. I have been chosen to attend her excursions in the past but Eth has always been sick and I've been unable to attend. This isn't fair for Ez who also needs her mum so today I took the gamble, sent Eth to school and went with Ez. The bus had to make a detour on the way home so I could pick him up! He is breathing fast and heart rate is up. Not sure what will happen. I know he is sick enough to be in hospital but after 376 inpatient days you get sick of the place!!! I don't count hospital days for the fun of it, I keep a spreadsheet of admissions and diagnosis so I can give it to new doctors. It saves time and effort. This year we have only had a couple of admissions which is good but home management is getting more demanding and tiring. We are already over the medicare safety net and it is only the beginning of May. Hopefully things will settle down soon.
Eth has oncology, respiratory and cardiac appointments coming up in June/July...
Ethan commenced the drug sildenafil on the 2nd April. I had forgotten how scary and nerve wracking new things are. The staff discussed all the side effects and scenarios and went about their business. They started with an early dose so that if something went wrong there was an abundance of staff, luckily for us everything seemed to run smoothly. During the admission Erin was very unwell. We couldn't keep her awake. Ethan also managed to come down with this bug. Very hard to monitor him when you can't wake him! The docs were happy that all limits were fine and that sleeping isn't linked to the drug. It was the subjective things we couldn't monitor like blurred vision, headaches, dizziness, pins and needles. We just had to hope that when he woke he was comfortable. The sildenafil has not made him worse and it hasn't made any difference to his daily life but on average his sats are sitting a little higher which means nothing if he can't walk or do anything anyway. During this admission Adele turned 5. Another family birthday celebrated in hospital..
Ethan has also had a chest CT which shows he does not have bronchiectesis. It was a mixed appointment. I should have been very happy. A good report but we have been treating him with tune ups for years and he is symptomatic of it. I asked if there was a mix up with the results. Dr Armstrong was also suprised and despite the good report Ethan still needs nebulisers and physio sessions twice a day. So does the report mean anything to our management, no.
Ethan has also had a month of cardiac monitoring. A few rhythm changes were detected but not enough to worry about, which indicated his fainting episodes are from the pulmonary hypertension. He hasn't had any more fainting episodes but he doesn't push himself and is not as active as he used to be.
We are currently in the process of applying for funding for a wheelchair. The wheelchair is measured and made specifically for him with oxygen basket and tray etc. We were told originally this could take up to a year but luckily for us there was a cancellation and our report said urgent. We got in within a couple of weeks and the chair has been ordered. The hospital funds a few thousand and we pay the out of pocket expense of about $1500. This will be a great help when it arrives.
We had a paediatrician apointment a few weeks ago. I spoke to them about Ethan's sleeping, well lack of sleeping. I was hoping to drug him at night so that I could get more than 1 hour at a time but this is not an option at the moment and we are trying new things to help him feel more at ease. Hopefully something will work. On a better note he has grown and put on weight.
Ethan is currently unwell and has been for a month. The usual coughing, running nose, perforated ears etc. He is unpredictable. Sometimes he lasts a full day at school and other days I have to pick him up early. It is very hard to plan things. I have had numerous times where I've had to stop and go and other times I don't go out because I think he'll need to be picked up and he's fine. I sent him to school today so that I could attend a school excursion with Erin. I have been chosen to attend her excursions in the past but Eth has always been sick and I've been unable to attend. This isn't fair for Ez who also needs her mum so today I took the gamble, sent Eth to school and went with Ez. The bus had to make a detour on the way home so I could pick him up! He is breathing fast and heart rate is up. Not sure what will happen. I know he is sick enough to be in hospital but after 376 inpatient days you get sick of the place!!! I don't count hospital days for the fun of it, I keep a spreadsheet of admissions and diagnosis so I can give it to new doctors. It saves time and effort. This year we have only had a couple of admissions which is good but home management is getting more demanding and tiring. We are already over the medicare safety net and it is only the beginning of May. Hopefully things will settle down soon.
Eth has oncology, respiratory and cardiac appointments coming up in June/July...
Tuesday, April 01, 2008
Admission #83
Ethan heads back into Monash tomorrow for a scheduled admission which will start him on the sildenafil medication. There are 3 possible scenarios with taking this drug as it is experimental.
1. It could improve his pulmonary blood flow, therefore increasing oxygenation
2. It could do nothing
3. It could make his pulmonary hypertension worse
During his admission, they will monitor his blood pressure and o2 sats for up to 3 days.
This is the last throw of the dice, so we will see how it goes.
In other news, we went camping over Easter on the banks of the Tarwin River. Ethan was excited about going fishing, but due to lack of rainfall, the fish weren't there, either was the water. We explained that when it rains, the river will fill up with water and the fish will come. On the sunday night, Ethan came darting out of the tent when we had a brief rain shower and was signing to go fishing!
The kids had a great time camping and we will make it an annual event.
Easter Bunny also found us there.
1. It could improve his pulmonary blood flow, therefore increasing oxygenation
2. It could do nothing
3. It could make his pulmonary hypertension worse
During his admission, they will monitor his blood pressure and o2 sats for up to 3 days.
This is the last throw of the dice, so we will see how it goes.
In other news, we went camping over Easter on the banks of the Tarwin River. Ethan was excited about going fishing, but due to lack of rainfall, the fish weren't there, either was the water. We explained that when it rains, the river will fill up with water and the fish will come. On the sunday night, Ethan came darting out of the tent when we had a brief rain shower and was signing to go fishing!
The kids had a great time camping and we will make it an annual event.
Easter Bunny also found us there.
Thursday, March 06, 2008
Admission details and plan
Ethan has just spent the last 13days at Monash having IV antibiotics and cardiac investigations. But before I explain these tests I should give some background info.
Over the last 4 months Ethan has struggled on and off with being active. Sometimes he seems fine and at other times he needs to stop as quick as he starts, he turns a purple color and grabs at his chest. It then takes a while to get his color and breathing back to normal. There has been a couple of episodes where he has gone extremely blue/purple and fainted. One of these episodes happened with the girls. Ethan didn't want Erin playing with one of the million Thomas trains, she was only to have the crappy old red one so he snatched Thomas and ran. Erin was in hot pursuit when he collapsed. Erin was screaming "I've killed him", Adele was screaming "he's dead, you killed him". It was hard trying to deal with Ethan while trying to calm the girls, eventually everything calmed down and I made myself a strong coffee! Trying to debrief with the girls afterwards was difficult and has raised many issues on how much do they need to know? It also raised the issue of how much does Ethan need to know?
To add to these episodes Ethan has also been unwell with pneumonia. At our respiratory appointment I explained Ethan's cough patterns which lead to an admission. Ethan cracked it with David (doctor) as there were no beds on the Thursday but he was very excited and happy on Friday when we got the go ahead!
David also wanted the cardiologist to review Ethan to rule out endocarditis. The cardiologist who has known us from day 1 was concerned about the blue episodes being a rhythm problem rather than from the pulmonary hypertension. From there Ethan had an echo, ecg, chest xray, 24hour holter monitor and a stress test on the treadmill. We were told the ECG and echo were normal, I think they meant normal for Ethan as there is no way they can be normal! The holter monitor showed some variations but they were rare. The cardiologist hasn't gone into details about them, but she wants Ethan to have an event monitor for 3 weeks. Ethan coped well with these tests but I knew the big hurdle was his cooperation on the treadmill. How can you get a 6 year old boy who feels like crap on exertion to walk on a treadmill at different intensities while being connected to ECG monitoring, blood pressure and sat machines? His cooperation at 100% was needed if we were to get any results. The answer Bribery! First stop Kmart. Ethan was fascinated by some lego at a friends house and was asking for it for his 7th birthday. So when I appeared that morning with the lego box we were well on the way. "You do the test, you can have the lego". It worked a treat. He got hooked up and away he went with no problems. He managed a massive 3 and half minutes at stage 1 before the cardiologist called it quits. During this time he was extremely blue, sats were 50% and he was complaining of chest pain. It took a couple of minutes for Ethan's heart rate to come down, and sats to go back up. The test showed that Ethan's heart muscle itself isn't getting enough oxygen on exertion. We also need to speak to the cardiologist in more detail about this but it's obvious that it's not the best news going around.
This makes physio harder. Ethan needs to exert himself during physio sessions and the physiotherapists need to encourage him but they can't push him too hard. We are lucky the physios at Monash are good at their job. The cardiologist's orders were that when Ethan says stop it should be respected. She also believes Ethan will stop by himself when he feels symptomatic.
Ethan also had numerous blood tests while we were in. All of which are ok other than his Vitamin D level which is extremely low. We are not too sure why it is so low. It will be monitored and if some more results come back low he will need to start taking supplements.
I've also spoken to occupational therapy about a medical stroller. This will be fitted tomorrow and we can use it for a month. We are unsure about long term use at the moment. The OT at the hospital will speak with the OT at Glenallen and we will go from there.
We are to see our cardiologist at the kids in a couple of weeks. I'm not sure when the event monitor will be organised. I guess we'll find out more on this day about a lot of things. From the respiratory side of things Ethan has to have antibiotics, ventolin, nebulisers and physio sessions twice a day for 2 weeks. He will then have a chest CT and follow up appointment so we can check the progression of the bronchiectesis and plan future tune ups and treatment plans.
Over the last 4 months Ethan has struggled on and off with being active. Sometimes he seems fine and at other times he needs to stop as quick as he starts, he turns a purple color and grabs at his chest. It then takes a while to get his color and breathing back to normal. There has been a couple of episodes where he has gone extremely blue/purple and fainted. One of these episodes happened with the girls. Ethan didn't want Erin playing with one of the million Thomas trains, she was only to have the crappy old red one so he snatched Thomas and ran. Erin was in hot pursuit when he collapsed. Erin was screaming "I've killed him", Adele was screaming "he's dead, you killed him". It was hard trying to deal with Ethan while trying to calm the girls, eventually everything calmed down and I made myself a strong coffee! Trying to debrief with the girls afterwards was difficult and has raised many issues on how much do they need to know? It also raised the issue of how much does Ethan need to know?
To add to these episodes Ethan has also been unwell with pneumonia. At our respiratory appointment I explained Ethan's cough patterns which lead to an admission. Ethan cracked it with David (doctor) as there were no beds on the Thursday but he was very excited and happy on Friday when we got the go ahead!
David also wanted the cardiologist to review Ethan to rule out endocarditis. The cardiologist who has known us from day 1 was concerned about the blue episodes being a rhythm problem rather than from the pulmonary hypertension. From there Ethan had an echo, ecg, chest xray, 24hour holter monitor and a stress test on the treadmill. We were told the ECG and echo were normal, I think they meant normal for Ethan as there is no way they can be normal! The holter monitor showed some variations but they were rare. The cardiologist hasn't gone into details about them, but she wants Ethan to have an event monitor for 3 weeks. Ethan coped well with these tests but I knew the big hurdle was his cooperation on the treadmill. How can you get a 6 year old boy who feels like crap on exertion to walk on a treadmill at different intensities while being connected to ECG monitoring, blood pressure and sat machines? His cooperation at 100% was needed if we were to get any results. The answer Bribery! First stop Kmart. Ethan was fascinated by some lego at a friends house and was asking for it for his 7th birthday. So when I appeared that morning with the lego box we were well on the way. "You do the test, you can have the lego". It worked a treat. He got hooked up and away he went with no problems. He managed a massive 3 and half minutes at stage 1 before the cardiologist called it quits. During this time he was extremely blue, sats were 50% and he was complaining of chest pain. It took a couple of minutes for Ethan's heart rate to come down, and sats to go back up. The test showed that Ethan's heart muscle itself isn't getting enough oxygen on exertion. We also need to speak to the cardiologist in more detail about this but it's obvious that it's not the best news going around.
This makes physio harder. Ethan needs to exert himself during physio sessions and the physiotherapists need to encourage him but they can't push him too hard. We are lucky the physios at Monash are good at their job. The cardiologist's orders were that when Ethan says stop it should be respected. She also believes Ethan will stop by himself when he feels symptomatic.
Ethan also had numerous blood tests while we were in. All of which are ok other than his Vitamin D level which is extremely low. We are not too sure why it is so low. It will be monitored and if some more results come back low he will need to start taking supplements.
I've also spoken to occupational therapy about a medical stroller. This will be fitted tomorrow and we can use it for a month. We are unsure about long term use at the moment. The OT at the hospital will speak with the OT at Glenallen and we will go from there.
We are to see our cardiologist at the kids in a couple of weeks. I'm not sure when the event monitor will be organised. I guess we'll find out more on this day about a lot of things. From the respiratory side of things Ethan has to have antibiotics, ventolin, nebulisers and physio sessions twice a day for 2 weeks. He will then have a chest CT and follow up appointment so we can check the progression of the bronchiectesis and plan future tune ups and treatment plans.
Saturday, February 23, 2008
Back in
Ethan's respiratory Doc said to go into hospital for a tune up. A bed was available yesterday (fri) at 3pm, so he will probably be in for about 5 days or so.
Ethan was excited about going back to hospital (seriously)
Ethan was excited about going back to hospital (seriously)
Monday, February 18, 2008
the long awaited update
so much has happened since the last entry...
We had another two days in Perth. We spent the 22nd sitting at Scarborough beach. It was a beautiful day and nice just to sit and relax. The kids had a ball and Scarborough beach has to be one of the nicest beaches. We spent the morning of the 23rd looking at some shops and getting some souvenirs before flying back to Melbourne. I was worried about the flight as Ethan was not 100% but he handled it fine and my concerns were for nothing. Overall we had a great trip.
We were home just in time for Christmas. I was very excited about Christmas. It was like being a kid all over again. I woke early but the kids slept in!! They were so tired. We did the presents and when it was time to leave for lunch Ethan was most upset. All he wanted was to stay home and rest. Ethan got a PSP from santa which he loves. He also enjoyed opening his remote control monster truck but he was annoyed that both of these needed charging first!! We spent Christmas day and Boxing day catching up with family. Between the 27th and new years we were at home with no outings. The kids finally got to unwind and Ethan finally got to enjoy his presents.
During this time Ethan was up and down still. He was very tired and lethargic one minute and happy playing the next. I spent hours rubbing his legs. He complains about his legs being sore and rubbing them is the only thing that seems to work. I was tossing up about a hospital admission but every time I said I was taking him he improved and had a better day.
On the 16th January Ethan turned 6. I organised a play in the park with his friends. They all had a great day and he got more presents! We gave him a steering wheel for the play station. A huge success. He loves it. He also got a skateboard which he absolutely loves. I can't watch him on it but I can't look away either. It's very nerve racking. He has kissed the pavement a few times but hasn't broken anything yet!
Eth had a paediatrician appointment towards the end of January. He was still up and down and this appointment was good to help gage where he was at. The paediatrician confirmed he had decreased air entry in both right and left lung. He was still having the odd temperatures but nothing consistent. We decided to change his antibiotic and dosage and if he got a temperature or asked to go to hospital I was to take him. We also spoke about his leg pain and the impact it has on his walking. He can walk but chooses to push himself in the wheelchair. The paediatrician had a few theories on this. All of Ethan's illnesses can lead to leg pain, adding all the effects together makes it worse. We are not sure how to treat it as the medicine he would usually prescribe would flare up his asthma and thus he would need more ventolin and steroids, increasing his heart rate and hypertension, decreasing his immune system and increasing his pain!
Eth continued being up and down until school started. I tossed up the idea of a tune up prior to school but he was coping. He wasn't improving but wasn't getting worse, so we decided to wait and see. He has 5 full days with the bus coming at 8 and dropping him back at 4.15. He gets very tired but they allow him to rest in the bean bag and the nurse checks him regularly. Overall he enjoys school and loves the bus trip in on the freeway.
Ethan and Luke were lucky to get tickets to the 20/20 cricket at the MCG. Ethan was asleep when they got home but the next day he couldn't stop talking about it. He loved the excitement of the 20/20, the big hits and music. He also couldn't stop talking about the Rogue traders playing. He loves Natalie! He has a cricket bat which he swings like a dunny door and the bowling action is quite funny but he enjoys it.
Things are still up and down health wise. He has a respiratory appointment this week which will be interesting. I have a lot of questions about antibiotics, oxygen and leg pain, hopefully I can get some answers.
Ethan has also had to deal with loss and grief over the last couple of weeks. Sadly we have had to say goodbye to Poppy John Bell. It has been a very emotional time. It was sudden and extremely hard to explain to the kids. Ethan has a framed photo of Poppy John holding him from Christmas 2004 in his cupboard and sometimes I wake in the night to find Ethan has turned his light on and is holding the photo. He tells me he cries and looks to the sky for Poppy but can't see him, why mum? John has been a huge part of our life and it is very hard to deal with. We all miss him.
On the other hand Aunty Monique is getting married and all of the kids are a part of it. So one minute we are putting death notices in the paper the next we are looking at engagement notices. A major roller coaster of emotions and a reminder that life goes on despite how bad we feel. I'm not sure if Ethan understands what he'll be doing but he said yes. We'll have to wait for the day to see if he gets shy but I know he will look bloody cute in a suit!!!
photos to follow.....
Jo
We had another two days in Perth. We spent the 22nd sitting at Scarborough beach. It was a beautiful day and nice just to sit and relax. The kids had a ball and Scarborough beach has to be one of the nicest beaches. We spent the morning of the 23rd looking at some shops and getting some souvenirs before flying back to Melbourne. I was worried about the flight as Ethan was not 100% but he handled it fine and my concerns were for nothing. Overall we had a great trip.
We were home just in time for Christmas. I was very excited about Christmas. It was like being a kid all over again. I woke early but the kids slept in!! They were so tired. We did the presents and when it was time to leave for lunch Ethan was most upset. All he wanted was to stay home and rest. Ethan got a PSP from santa which he loves. He also enjoyed opening his remote control monster truck but he was annoyed that both of these needed charging first!! We spent Christmas day and Boxing day catching up with family. Between the 27th and new years we were at home with no outings. The kids finally got to unwind and Ethan finally got to enjoy his presents.
During this time Ethan was up and down still. He was very tired and lethargic one minute and happy playing the next. I spent hours rubbing his legs. He complains about his legs being sore and rubbing them is the only thing that seems to work. I was tossing up about a hospital admission but every time I said I was taking him he improved and had a better day.
On the 16th January Ethan turned 6. I organised a play in the park with his friends. They all had a great day and he got more presents! We gave him a steering wheel for the play station. A huge success. He loves it. He also got a skateboard which he absolutely loves. I can't watch him on it but I can't look away either. It's very nerve racking. He has kissed the pavement a few times but hasn't broken anything yet!
Eth had a paediatrician appointment towards the end of January. He was still up and down and this appointment was good to help gage where he was at. The paediatrician confirmed he had decreased air entry in both right and left lung. He was still having the odd temperatures but nothing consistent. We decided to change his antibiotic and dosage and if he got a temperature or asked to go to hospital I was to take him. We also spoke about his leg pain and the impact it has on his walking. He can walk but chooses to push himself in the wheelchair. The paediatrician had a few theories on this. All of Ethan's illnesses can lead to leg pain, adding all the effects together makes it worse. We are not sure how to treat it as the medicine he would usually prescribe would flare up his asthma and thus he would need more ventolin and steroids, increasing his heart rate and hypertension, decreasing his immune system and increasing his pain!
Eth continued being up and down until school started. I tossed up the idea of a tune up prior to school but he was coping. He wasn't improving but wasn't getting worse, so we decided to wait and see. He has 5 full days with the bus coming at 8 and dropping him back at 4.15. He gets very tired but they allow him to rest in the bean bag and the nurse checks him regularly. Overall he enjoys school and loves the bus trip in on the freeway.
Ethan and Luke were lucky to get tickets to the 20/20 cricket at the MCG. Ethan was asleep when they got home but the next day he couldn't stop talking about it. He loved the excitement of the 20/20, the big hits and music. He also couldn't stop talking about the Rogue traders playing. He loves Natalie! He has a cricket bat which he swings like a dunny door and the bowling action is quite funny but he enjoys it.
Things are still up and down health wise. He has a respiratory appointment this week which will be interesting. I have a lot of questions about antibiotics, oxygen and leg pain, hopefully I can get some answers.
Ethan has also had to deal with loss and grief over the last couple of weeks. Sadly we have had to say goodbye to Poppy John Bell. It has been a very emotional time. It was sudden and extremely hard to explain to the kids. Ethan has a framed photo of Poppy John holding him from Christmas 2004 in his cupboard and sometimes I wake in the night to find Ethan has turned his light on and is holding the photo. He tells me he cries and looks to the sky for Poppy but can't see him, why mum? John has been a huge part of our life and it is very hard to deal with. We all miss him.
On the other hand Aunty Monique is getting married and all of the kids are a part of it. So one minute we are putting death notices in the paper the next we are looking at engagement notices. A major roller coaster of emotions and a reminder that life goes on despite how bad we feel. I'm not sure if Ethan understands what he'll be doing but he said yes. We'll have to wait for the day to see if he gets shy but I know he will look bloody cute in a suit!!!
photos to follow.....
Jo
Friday, December 21, 2007
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.
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.
Tuesday, November 20, 2007
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!!
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!!
Saturday, November 03, 2007
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.
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.
Wednesday, October 24, 2007
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.
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.
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