Ethan will be coming home tomorrow after a very ordinary admission. I have done nothing but complain and whine for the last 2 weeks. We have had a lot of issues regarding bed time. I think he waves us of happily so he can get up and play. He has the staff wrapped around his little finger and gets away with murder even at midnight! We have also had major issues with his diet. Ethan is on a high calorie, thickened fluid diet as he has weight issues and aspiration issues so when the wrong meals come that have skinny everything and drinks that aren't thickened I get pretty pissed. I had nurses, food monitors, dieticians, PSA's, doctors and the charge nurse all involved in my anger!! Not sure if I'll ever get reemployed there!!! These issues come at a time when Ethan is at an all time low with his weight to age ratio. We have strict guidelines to follow to facilitate weight gain. If it doesn't go our way he will need to have a nasogastric tube inserted and supplements given either continuously overnight or top up feeds during the day.
Tomorrow is Ethan's 400th inpatient day. No wonder he is so confident there! Just as important it is Erin and Adele's 400th day too. They have had a horrible 2 weeks and both of them are out of sorts. I have warned them about Ethans weight. Adele is not too fussed, knows about the tube, has seen photos of Ethan with one from chemo days but is pretty laid back. Ez on the other hand is terrified. She can remember seeing it in his nose and out is mouth during episodes of vomiting after chemo, and me sitting on him to put it back in etc. Hopefully we can get him to eat lots of fatty stuff and it's not needed.
Thursday, August 28, 2008
Monday, August 25, 2008
August Ceftriaxone
Ethan was admitted to Monash last Monday for a chest tune up. This includes the usual IV antibiotics and physio. We were hoping it would be for a week and we would be home today but we are now looking at discharge on Friday. He settled in well and is running the place in true Ethan style. He is very comfortable there. He gives all the staff a high 5 goodnight and waves us off happily.
The IV came out today and had to be resited. He rode the bike into the treatment room, told the doctor how and where he would like the IV inserted and watched to make sure he was doing it properly. Not many 6 year olds would do that! He has also started doing his own medication. The nurses bring it in and he takes control putting in the IV bung and pushing it. He told me the other day he was going to be a nurse!! I'm not too sure what happened to driving the Ghan......
The physiotherapist has been using the vest during physio with good results. This takes some pressure of him when his heart doesn't allow him to participate.
The IV came out today and had to be resited. He rode the bike into the treatment room, told the doctor how and where he would like the IV inserted and watched to make sure he was doing it properly. Not many 6 year olds would do that! He has also started doing his own medication. The nurses bring it in and he takes control putting in the IV bung and pushing it. He told me the other day he was going to be a nurse!! I'm not too sure what happened to driving the Ghan......
The physiotherapist has been using the vest during physio with good results. This takes some pressure of him when his heart doesn't allow him to participate.
Sunday, August 17, 2008
Wednesday, July 30, 2008
Wednesday, July 16, 2008
the last 6 weeks
So much has happened in the last 6 weeks.
A couple of days after Ethan was discharged he was having the odd fever and was very blue and lethargic. I tried to speak to the respiratory doc, paediatrician, and cardiologist but they were all out of the office. I tossed up the idea of calling the respiratory docs mobile number (which i had stored in my mobile from a previous occassion) I didn't want to harrass him on a day off but I needed to speak to someone so I called. The receptionist should have said he was over seas not out of the office. 3am his time he still managed to organise scans and follow up at monash for us. I felt bad but atleast we got results that his chest wasn't any worse and we could continue on at home.
We were lucky enough to be given tickets to the V8 supercars at Sandown. We were even luckier to see pit lane, the garage, sit in the car, see the truck and get some merchandise. It was just like the pixar movie cars. Ethan loved it. In Dr David's words, "He is such a petrol head!" This was followed with Ethan and Adele attending junior camp. They both had a ball with the many activities organised for them. Ethan loved telling us about the bus trip there, the bridges and the new roads he went on! It was good to see them happy after spending a couple of tiring weeks at monash. We would like to thank Challenge for providing us with these great experiences.
Ethan has also been very excited as Eastlink has opened. After watching it progress every day on the bus he finally got to go on it. He doesn't stop talking about it, looking at posters of it and watching a DVD about it. Glenallen organised the posters and DVD as he wouldn't stop talking about it at school. In news group he would announce how many days to the opening etc. Glenallen are also organising for him to go in the Eastlink patrol vehicle and command centre. He knows all of the bridges and off ramps, he especially loves the monash/eastlink interchange. He plays eastlink on the posters (some are laminated) and makes the bridges with his train tracks. We have threatened to take his posters off him when he is naughty, he soon behaves!
During the school holidays we went to Mt Baw Baw for 4 days. We have wanted to go in the past but I've always opted to holiday in the sunny places as Ethan doesn't tolerate being cold and he manages to look even bluer than usual. I rugged him up like an eskimo and off we went. It is the first time Ethan has been quiet in the car, he went from blue to green! Luckily he didn't vomit just felt car sick. It is the first family holiday we've been on where Ethan has not become acutely unwell. Amazing!! The kids had a ball. Ethan didn't like the wind or the snow hitting his face but loved playing in the fresh snow while the sun was out. He loved tobogganing on the gentle slope but wasn't a fan of the faster hill or crashing! Overall he had a good few days.
Medically Ethan has had a few appointments.
Oncology appointment went well. All scans are clear. Dr Peter is happy with his progress and doesn't believe the cancer will come back.
Radiation oncology appointment also went well. There are no signs that the radiation has caused growth issues within his spine, or problems with his bowel and bladder, and it hasn't caused any other tumurs, all good.
Respiratory appointment went as good as it could. Ethan was in fine form asking Dr David to give him 5, in the city, pinch your titty! He was also showing off with the homer dance and calling everyone losers especially the medical students! Ethan is now rotating between augmentin duo and keflex. We need to go back in 2 months if we are not admitted before this. We left with the usual goodbye; see you on the ward in a few weeks. While we were at the respiratory appointment we saw physio. Narelle had managed to secure herself the new vest device so she hooked him up and away it went. The vest fills with air and shakes his chest making physio a lot easier and less strenuous. It was great. Ethan was nervous about it but soon realised it was fine. During our next admission we will get to play with it a bit more and if it doesn't interfer with cardiac blood flow we will hopefully trial one at home.
Ethan also had his Cardiac appointment. He had the usual scans and discussions and as a result the sildenafil has been increased and will get increased again in a week. We are doing this at home without monitoring so it's been a little scarey. So far so good. He has also started on 2 diuretics to help ease some puffiness and ease pressure from his heart. These seem to be helping at the moment.
Photos to follow
A couple of days after Ethan was discharged he was having the odd fever and was very blue and lethargic. I tried to speak to the respiratory doc, paediatrician, and cardiologist but they were all out of the office. I tossed up the idea of calling the respiratory docs mobile number (which i had stored in my mobile from a previous occassion) I didn't want to harrass him on a day off but I needed to speak to someone so I called. The receptionist should have said he was over seas not out of the office. 3am his time he still managed to organise scans and follow up at monash for us. I felt bad but atleast we got results that his chest wasn't any worse and we could continue on at home.
We were lucky enough to be given tickets to the V8 supercars at Sandown. We were even luckier to see pit lane, the garage, sit in the car, see the truck and get some merchandise. It was just like the pixar movie cars. Ethan loved it. In Dr David's words, "He is such a petrol head!" This was followed with Ethan and Adele attending junior camp. They both had a ball with the many activities organised for them. Ethan loved telling us about the bus trip there, the bridges and the new roads he went on! It was good to see them happy after spending a couple of tiring weeks at monash. We would like to thank Challenge for providing us with these great experiences.
Ethan has also been very excited as Eastlink has opened. After watching it progress every day on the bus he finally got to go on it. He doesn't stop talking about it, looking at posters of it and watching a DVD about it. Glenallen organised the posters and DVD as he wouldn't stop talking about it at school. In news group he would announce how many days to the opening etc. Glenallen are also organising for him to go in the Eastlink patrol vehicle and command centre. He knows all of the bridges and off ramps, he especially loves the monash/eastlink interchange. He plays eastlink on the posters (some are laminated) and makes the bridges with his train tracks. We have threatened to take his posters off him when he is naughty, he soon behaves!
During the school holidays we went to Mt Baw Baw for 4 days. We have wanted to go in the past but I've always opted to holiday in the sunny places as Ethan doesn't tolerate being cold and he manages to look even bluer than usual. I rugged him up like an eskimo and off we went. It is the first time Ethan has been quiet in the car, he went from blue to green! Luckily he didn't vomit just felt car sick. It is the first family holiday we've been on where Ethan has not become acutely unwell. Amazing!! The kids had a ball. Ethan didn't like the wind or the snow hitting his face but loved playing in the fresh snow while the sun was out. He loved tobogganing on the gentle slope but wasn't a fan of the faster hill or crashing! Overall he had a good few days.
Medically Ethan has had a few appointments.
Oncology appointment went well. All scans are clear. Dr Peter is happy with his progress and doesn't believe the cancer will come back.
Radiation oncology appointment also went well. There are no signs that the radiation has caused growth issues within his spine, or problems with his bowel and bladder, and it hasn't caused any other tumurs, all good.
Respiratory appointment went as good as it could. Ethan was in fine form asking Dr David to give him 5, in the city, pinch your titty! He was also showing off with the homer dance and calling everyone losers especially the medical students! Ethan is now rotating between augmentin duo and keflex. We need to go back in 2 months if we are not admitted before this. We left with the usual goodbye; see you on the ward in a few weeks. While we were at the respiratory appointment we saw physio. Narelle had managed to secure herself the new vest device so she hooked him up and away it went. The vest fills with air and shakes his chest making physio a lot easier and less strenuous. It was great. Ethan was nervous about it but soon realised it was fine. During our next admission we will get to play with it a bit more and if it doesn't interfer with cardiac blood flow we will hopefully trial one at home.
Ethan also had his Cardiac appointment. He had the usual scans and discussions and as a result the sildenafil has been increased and will get increased again in a week. We are doing this at home without monitoring so it's been a little scarey. So far so good. He has also started on 2 diuretics to help ease some puffiness and ease pressure from his heart. These seem to be helping at the moment.
Photos to follow
Sunday, June 08, 2008
Home again
The week of antibiotics turned in to 12 days. I should have realised a week was not enough as it is usually ten days at least. While Ethan was admitted they continued antibiotics and physiotherapy. Ethan is finding the physio sessions harder as his heart doesn't allow him to be as active. He had a major episode during physio where he went very cyanotic; extremely blue and very short of breath. It scared the hell out of the physio and the staff around. He usually stops prior to that happening. They are trying to get their hands on some new whizz bang thing which allows him to be passive but moves his chest and makes him cough but it all comes down to budget. The physiotherapists are great with him. He has a couple of favourites but he loves Narelle the best, "I love Narelle". Overall he enjoys physio but sometimes its a real battle especially if he is feeling a little off prior to starting. The plan is to stay on antibiotics for 6 weeks until our follow up appointment, the usual regime of home physio and oxygen as needed. The sildenafil has been increased but there is still room to increase it again which will most likely happen during our next admission. Overall his oxygen saturations can range from 70-80% when sitting still, 60-70% with a chest infection and when he is active they are too low for the machine to detect. They drop during the everyday activities like dressing and eating. The eating seems to be the big issue. He goes blue and grabs at his chest a fair bit. It can be pretty scarey. Overall his cyanosis is getting worse and comes on quicker. We have a cardiac appointment in a about a month which we will be discussing ways to manage this.
We are all happy to be home except Ethan who has already asked to go back!
We are all happy to be home except Ethan who has already asked to go back!
Friday, May 30, 2008
pneumonia
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!
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!
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.
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