face paint and parties

Ethan has been busy in the last month. Not with doctors appointments but with christmas celebrations! This is the first time he has not had a hospital admission leading up to christmas. It is good to see his reaction to the festive season.

Luke had some annual leave in November. We did a couple of day trips to the zoo and beach. These days were enjoyed by all. Ethan actually ventured off the towel at the beach! He not only walked on the sand but he also went knee high in the water. I never thought this would happen!



The camp quality christmas party was held at the zoo this year. The kids enjoyed the entertainers, the carousel, and their presents from santa. It was good catching up with the other families we went through treatment with (some who aren't as lucky as us).




The next christmas party was SCCS, Luke's work. This day was spent at the Healesville races. The kids loved watching the horses. Ethan was excited. He would light up making the sign for horse but this was nothing compared to when the ambulance would go past. The sign for that and the noise was a lot louder! The fairy face painter upset him by not knowing how to paint Thomas. He settled with spiderman but he let her know he was cranky. Luckily when the presents came out Ethan received a thomas book. All was forgiven.



Challenge put on their massive christmas party. This is the biggest most spectacular christmas party. There were rides upon rides. The kids absolutely loved it. Ethan enjoyed the car rides, swings and slides. He even convinced the face painter to paint Thomas. He was a happy boy! Santa gave him a big Bob the Builder. He was pretty excited about that too.









The heartkids christmas party was the day after. The kids were exhausted but still managed to have a good time. They had a kids play about rudolph and Australian animals. The kids enjoyed it and are still singing some of the songs. Santa was a huge hit with Ethan. He was liking the idea of a present and wouldn't take his eyes off him. Ethan was given a batman torch. He plays with it non stop. In the middle of the day, I find him in the pantry shining the bat logo onto the cereal boxes!



Today we had the KOALA christmas party. This was held at a miniature railway. Ethan had a ball. I'm surprised his hand didn't fall off with all of the train signing! I chose a tiger for Ethan's face paint. He was a little disappointed it wasn't Thomas or spiderman but warmed up to the idea quickly once he saw it and everyone was commenting. He looked pretty cool. Today we caught up with many people. It was a good day enjoyed by all.





As well as christmas parties Ethan also received a parcel in the post from Dr Claire. The thomas jumper was a huge treat. It's not allowed to be washed and if I manage to sneak it into the machine I get in big trouble and he definitely doesn't like waiting for it to dry.



To the medical side of things. He has a chest infection causing his asthma to play up. We have increased the ventolin and started antibiotics. He also has a perforated ear drum. I rang the ENT waiting list as it has been longer than originally planned. They said early in the new year. I would have liked it before christmas, well actually I would have like it a few months ago!

good reviews

For all of the regular blog visitors, I'm sorry about the delay. Would you believe I actually typed an entry and saved it as a draft but somehow lost it!!

Ethan has been pretty good. He hasn't had a hospital admission since September. Our biggest stay at home for quite some time. He is still waiting for grommets and a look at his ears etc. I don't think it should be much longer. He is still snotty but no discharge from his ear at the moment!

We are waiting for the final word about early education and kinder but we are 99.9% sure he will do kinder Monday, Tuesday and Thursday and early education Wednesday and Friday. I have started increasing his creche hours to help him cope with a busier week in preparation for next year.

His communication skills are improving slowly. He is definitely a lot louder and has become quite a little boy. He is pretty cheeky at times and a lot more active. He is slowly moving from trains to cars and trucks but Thomas is still always near by! He has also started playing with other kids rather than parallel play.

Ethan had a respiratory appointment yesterday. All is good. David is happy with his progress. He doesn't need to see us for at least 6 months. We are to continue with the current plan until we get a good winter out of him so at least one more year of the honey thick fluids (lets hope next winter is better!). The asthma management and chest physio also remains the same. He did diagnose bronchitis while we were there. We have increased his ventolin to help with this and if Ethan develops a temperature he needs antibiotics but otherwise he is coping well.

Ethan has also had his oncology appointment. He had the usual scans, (chest xrays, bloods, and ultrasounds) All is good. Peter is happy with all of the results. Ethan was pretty cheeky with Peter. At one point he was swinging from him!

Ethan was pretty happy to be back there. He is so confident walking around Monash. It is amazing the difference in confidence. When we there we caught up with a lot of nurses. Ethan had plenty of hugs and kisses for his girlfriend Kate, he was quite disappointed to find she wasn't working in the day unit but happy to see her on the ward. We have also said goodbye to Carly. Carly has shared the journey with us. She is the one nurse who has seen Ethan's fight from the first day on the cardiac ward at RCH (7west). It was nice to see a familiar face when we first started going to Monash especially one who had been so involved in his cardiac care. Her role at Monash was not on the ward but the time she allocated to us and her support was amazing. It was very sad saying goodbye but we will see each other again! THANKS CARLY.

progress report

Ethan was enjoying the time at home. There was no sign he was sick and then I noticed ooze from his left ear. We weren't even home two weeks. He had a respiratory follow up appointment at Monash so an ENT appointment was made for the same day.

The ENT appointment went well. He needs a grommet in his right due to fluid behind the drum. The left ear hasn't healed. He has been commenced on ear drops to aid the process. Hopefully these do the trick and he can have a grommet inserted into that one too. He also needs an endoscopy. This will provide more information about his swallowing insufficiencies. We are on a waiting list for these procedures. Pre admission forms have been completed. There was only 2 lines for past history...I attached the three page spreadsheet!!

The respiratory appointment went well. We are to press on with everything we are doing. The chest xray was a little better. Hopefully the next one will be even better.

He remains happy and playful but spiking temperatures on and off. He is also pretty snotty. Nothing new really.

A speech pathologist from specialist childrens services has been seeing Ethan. Ethan has built a strong relationship with him. Hopefully now we can start making some progress with communication. We are going to work on more signing and the use of picture cards. He believes he is a long way off making sounds. Not the best news but a positive plan to aid communication and reading skills. Specialist children services went to the creche were Ethan attends and spoke in detail their roles in helping him. He has fitted in at creche really well. He has made friends with a couple of little kids and looks forward to playing with them.

Ethan has been booked in for an early education program at the Dandenong Valley Specialist School next year. He will go two days a week. He will also go into main stream kinder for social skills. We are not sure of days and hours, or whether he can get some assistance in the kinder room. The forms have been completed and now we are waiting. It will be a big load. Hopefully he doesn't keep getting sick next year so he can get the full benefit.

Photos soon!

pneumonia

Where do I start?

continuing from the last entry....
Ethan had another appointment on the 18th of August with Dr Long about perforating the other eardrum and the cough not clearing. Dr Long couldn't do anything. Ethan was already on antibiotics and steroids. The advice was try and and get by over the weekend until he sees the ENT on Monday. If he develops fevers go to Monash as his chest will most likely be the problem.

On the Saturday Ethan had a temperature. It wasn't that high and he was coping alright so we didn't rush off to Monash. On Sunday he had some more fevers but was still coping with them well. As the ENT appointment was early Monday morning we decided to wait for that and plan to go to Monash straight after it. On Monday morning Ethan wasn't coping as good. We still went to the ENT appointment. Dr Bucchannan took a brief history from the last 8 months (we have seen him before so he already had the extensive history), told us he needs grommets and an endoscopy when he is well enough, rang Monash emergency and sent us on our way.

On arrival at Monash Ethan was even worse. The triage nurse took our details and told us to have a seat. This has happened before. We have a seat and a doctor comes and gets us straight away but not this time. When I realised this wasn't the case I was pretty annoyed as the triage nurse didn't even assess him. I went back and asked about the wait. She told me that it was an emergency department and the more serious cases are seen to first. I then asked her to assess his oxygen levels as he was very blue. She told me to have a seat. Another nurse came to take a handover at this point. After her handover she managed to get us in straight away. Ethan was pretty flat and not coping at this point. The doctor was asking about his oxygen levels as he looks fairly blue. I told him the bitch at the front didn't take them or assess him other than a temp which he didn't have. He was also pretty pissed and was putting in a complaint. Ethan was working extremely hard with each breath and needed oxygen. The doctor was overheard saying "You don't leave a boy in respiratory distress waiting for 1.5hours. His sats are in the mid 60's, respiratory rate and effort extremely high and his heart rate is also extremely elevated. Did you look at this boy?" Someone on our side.

Ethan was admitted with pneumonia. He picked up quickly with oxygen and IV antibiotics. On Tuesday the medical team were happy with his progress and wanted to send us home on oral antibiotics. I knew this wouldn't work he was still chesty and had been on oral antibiotics at home before getting worse. Still annoyed at the poor management Ethan was receiving I dug my heels in and said no. We were transferred from the medical to respiratory team. Finally someone who would listen. The respiratory consultant, Dr Armstrong has dealt with Ethan numerous times in hospital and also follows up Ethan's asthma management. We sat down and spoke at length about Ethan always being chesty and readmitting for these chest tune ups. Due to the amount of lung infections and the severity of them (2 ICU admissions due to pneumonia)it was decided Ethan would need to stay until next week at least on IV antibiotics, daily chest physio and when he picks up they planned to run scans and tests and get to the bottom of it. There were a few reasons as to why he might bounce back in all the time. The most likely are that he was aspirating or has immune problems. These are issues to do with his syndrome.

On Tuesday afternoon Ethan dropped his sats and was flat again. Lucky we didn't go home! The same doctor who wanted to send us home came into the room commenting on how he didn't think Ethan needed oxygen as he saw him playing earlier. I couldn't hold back anymore. I told him Ethan needed the oxygen and the reasons why and that they weren't taking it off until he clinically didn't need it and I was happy. The oxygen stayed for a couple of hours when he picked up again.

Over the next couple of days Ethan was up and down. Once he improved all of the scans were ordered. The first was a milk scan to see if he aspirates (when some fluid goes into your lungs when drinking). Ethan had to fast which wasn't an issue as he wasn't eating or drinking much anyway. He then had to drink a milk contrast drink. Straight after this he had to be scanned. He also needed to be scanned a few hours later. The later scan showed a patchy area over his right lung. He had aspirated. Ethan then had to go back the next morning to see if it was still there. It had gone.

The second scan was a video fluroroscopy. The same idea. He had to fast and then eat and drink different items smothered with contrast. The scanned him while chewing and swallowing. This showed no signs of aspiration. I was quickly told that even though he may not aspirate now doesn't mean the next mouthful he wouldn't. It showed that he has VPI velopharyngeal insufficiency. Basically he doesn't block off his nose properly. It also showed that he pools thin liquid such as water, juice and milk above his vocal folds putting him at risk of aspirating.

Even though this seemed like the most obvious reason of aspirating they wanted to rule out reflux. The next scan was a barium scan. He needed to drink more contrast and have more xrays and scans etc. This showed no signs of reflux.

The 24hour pH test was still ordered to look for reflux as well. This involved putting a tube (like a nasogastric) to sit just above the stomach. We don't have these results yet.

Ethan's immune function was also tested. We don't have these results yet.

During all of this he was losing weight. The dietitian was talking about nasogastric feeding. Ethan managed to avoid this but his weight is being very closely monitored at the moment.

The frustration with medical and nursing staff continued as well. A doctor commented about how he thought the scans would show nothing. If only. By this time I was too over it to argue any more.

The plan from here: To go home on thickened fluids (we add a vegetable gum to all drinks to thicken them), daily chest physio, oral antibiotics and come back in 2 weeks for a review.

So far we are managing at home. Ethan has made the change from thin to thick fluids well. It was a struggle at the start but has learnt to drink the slop now. He also tolerates the chest physio well. He has even learnt to enjoy it and use it in play. He gives Molly chest physio, well she does have a barking cough!

ear trouble

Since the last update...

Ethan went to see Dr Long on Monday. He began getting hot easily and then a moist cough developed as well as grunt breathing. As the xray still wasn't right a prompt visit to get on top of any pneumonia. All was well other than a noisy chest. After much discussion, the outcome was to prescribe some steroids rather than antibiotics.

He wasn't even out of the surgery for 30mins before he started discharging ooze from his left ear. A phone call and script left at the front counter for some antibiotics. Another perforated ear drum. How unlucky can he be.

On Tuesday before the script was collected he was very mucusy and his cough had worsened another appointment. Plan to continue with steroids and commence the antibiotic. Come back again if not getting better.

Today started off pretty good. The thought was maybe he'll get better without further intervention. That thought passed pretty quick when his right ear drum perforated. So another appointment tomorrow. Lucky he likes Dr Long!!

He is looking pretty blue at the moment. A result of having an infection and being clumsy. He was jumping on the bed and fell onto his cheek. He has a massive blue bruise from ear to nose. The fall hasn't stopped him though. He was caught jumping on the coffee table today. He sat in time out for 5 mins before he got up and did it again! He is very mischievous and naughty at the moment.




Attempting to hide in toy box.



And he wonders how they get scratched



Mum won't be mad for long when she realises I've made her a coffee!



Stacks On!

oncology appointment

Ethan had his oncology appointment and scans the other day.

He had to fast for the abdo ultrasound. I didn't think this would be a problem as he usually wakes in the morning and starts playing. It can be a real struggle to make him eat. He is also the last up so I thought we could all eat and he wouldn't know any different but that wasn't the case. Ethan woke first, and came to me with a bowl and the box of wheatbix!! Why is it when he is not allowed to eat he wants to? Very hard explaining "no you can't eat".

So to make it fair the girls and myself were made to fast too, we couldn't eat in front of him when he was so hungry. The ultrasound was at 8:30am so it wasn't that big of a deal. I packed enough food for breakfast and lunch so they could eat straight away. Ethan also had to have an xray and blood tests. Before the ultrasound they noticed the food bag. Tears everywhere. Not happy campers. The ultrasound took longer than usual. A new lady, three hungry kids, and a mother who needed a caffeine hit, not a good room to be in!!

He was shoveling down some food when they called for the xray. He wasn't happy about this and decided to tell them with a mouthful of food of course! Once he realized what was happening and that he gets to smile at the light he was very apologetic and even cuddled the nice apprentice who came for us. He sat up like Jackie, puffed out his chest and showed them how it is done! After the xray he apologized again.

The blood test was next. Another interruption in the eating cycle but they have the wiggles behind the door so it is OK. First he tells the nurses, separately of course, who each member is before he takes a seat and puts out his arm. This is where the girls begin to get upset. Needles and blood and its not fair etc but all is forgotten when the hear the word sticker. Ethan chooses the biggest Pooh bear sticker just to piss Adele. He smiles at her the whole time pointing. Adele and Erin push, shove, scratch, hit and miss out. More tears from the girls!!

The kids polish off all of the food before we get upstairs. They have full tummies, Sonia, Katrina and Kate upstairs. Happy campers finally!

While I am still getting through the door gasbagging Kate has weighed and measured all three kids. Ethan put on 1 kilogram and grew 1.5cm. We were all pretty excited until Kate told us Adele's measurements. She is officially taller than him. All was forgotten about the pooh bear sticker as "Me taller!"

The waiting room was busier than usual but plenty of activities and games so I could finally sit and relax. There was a girl in the waiting room, we had run into her during our scans. I had never seen her before so she was obviously a few years off treatment. Leukemia kids don't have ultrasounds and chest xrays, must be a solid tumor, maybe kidney?. I pulled out my badge and began questioning! The girl had her left kidney removed when she was four (Now 9). An amazing morning swapping stories with the adults in the room. One thing that came from it is that....We are extremely lucky.

We saw Peter and all is good. No signs of cancer. Still some signs of pneumonia. Another appointment in 3 months. I spoke to Peter about kidney tumors and finally meeting someone else. Over the last 11 years there has been an average of 1 diagnosed every year (in Victoria).

ENT review

Ethan's left ear was still discharging at the time of review. A change in antibiotics and some more ear drops were ordered. The change in treatment wasn't really doing much when I noticed a bloody discharge from his right ear. Another GP visit, more ear drops and a referral to an ENT (ears, nose and throat specialist)requesting his opinion about grommets (tubes in his ears). He has had 5 perforated ear drums since feb, not good for any one especially a boy with speech delay. We have an appointment in a few weeks.

Ethan has also had his developmental assessment. This was conducted by an early intervention worker and a speech pathologist. It was very interesting. They will send out a formal report. However they did make some comments on the day; "His chronological age is 42months the assessment placed him at 34months", "His visual capacity is very good", "He is good at matching shapes and colours", "He lacks some problem solving skills", "He has good concentration". Overall I was pleased with the intense 2 hours.

The speech pathologist has recommended Ethan have a full ENT review. (This will fit in quite well as he needs the ENT for his ears. He isn't sure about a couple of things and would like the review to hopefully rule out throat/nose problems. He has also given us some exercises to try and teach Ethan how to move his mouth and tongue. After he masters these exercises he can move onto exercises to help with sounds.

Other than the ear infections, things have been pretty positive.

mycoplasma pneumonia

Ethan's chest xray showed right middle and lower lobe and some left lower lobe changes. With a temperature and an increase in breathing we were referred to Monash. At Monash they did the usual blood tests and commenced IV antibiotics. They diagnosed mycoplasma pneumonia (for those not medically trained it is more common in teenagers than little tackers). The pneumonia wasn't sensitive to the oral antibiotics he was taking. A new antibiotic was prescribed and we were discharged. Only a two day stay. The alkaline phosphatase is back to normal :) and his hb is 150 (still trying to get to that 180 mark)

All was going well at home. He was half way through the antibiotic course when he had another temperature. Another doctor visit, another perforated ear drum (Same ear as the previous three) and more antibiotics. He has been on some sort of antibiotic for well over a month now. We have to go back in a couple of days to monitor the healing and to get a referral to an ENT specialist.

He has missed more speech therapy and creche. He had the worst of it during music group holidays so he didn't miss any of that. This term at music group he is to attend by himself. He had his first self lesson last week and apparently went well. We are relying on friends to drop him off and pick him up due to the time slot. Lucky for us he has always been easy going and things like that don't bother him.

Tonight we are all going to the Lion King. VSK managed to get us 5 tickets. Erin (who has already seen it thanks to challenge) and Adele are very excited, not too sure about Ethan though. He's not too fond of loud things (other than his poppy) so it will be interesting. When we saw puff the magic dragon he clung to me like a koala and this is a lot louder!

sick kids

Ethan had the follow up appointment with his paediatrician last Wednesday. It went extremely well. The antibiotics had done their job and his chest was clear. He didn't need another script and we don't need to go back for three months. All pretty exciting after a month of infection.

The high didn't last long though. He woke with a temperature Thursday morning. To cut a long story short, all 3 kids have been unwell for the last few weeks. One gets over it and another gets it etc. They all had GP appointments today. Ethan has an ear infection and most likely pneumonia. He has to have a chest xray in the morning followed by another doctors appointment. He has been commenced on oral antibiotics and can stay at home for now but the plan may change to IV antibiotics depending on the xray result and whether he has picked up at all since today. (The GP was happy to refer him to monash today but we decided to see if the oral antibiotics would have an affect first).

He has missed a lot of creche, music group and speech path due to being sick so hopefully we can get on top of it and he can make some progress in these areas.

pneumonia

Since the last update;

More antibiotics for the ear infection, a few days of gastro and bronchitis, so even more antibiotics.

He finished the course of antibiotics for the bronchitis but something wasn't right. He was grunting a lot and sleeping more but when he was up and about he was happy and playing like nothing was wrong. Was something not quite right or was I being over reactive? We saw the paediatrician and Ethan most likely has a form of pneumonia! We discussed the plan of attack and it was decided to hold off with the xray and try more antibiotics first. I was given the xray slip to get done if I felt he needed it. He has another appointment next week to keep an eye on it and if it isn't any better he will need to have an xray and blood tests.

Even though he has been sleeping more and grunting he is coping extremely well. He is still active and gets up to plenty of mischief. He still attends speech therapy both at group and one to one. He really enjoys both. Not too sure if we are wasting our time and money though!!

Luke will post some photos (as I still haven't learnt how)tonight or tomorrow.

cardiology appointment

Ethan had his cardiology appointment on Tuesday. His oxygen sats managed to creep up to 78%. They are not going to do anything about this; The same issue, we can change the conduit but can't close the VSD. They would like him to sat higher but they don't have many options. Dr Jim was very pleased with his progress since our last appointment and he doesn't need to see him for 6 months unless we start to worry about his progress. I spoke to him in detail about low sats and development and immunity etc. He seems to think the low sats won't hamper him too much, the 22q11 will be a bigger issue though.

His radiotherapy appointment was on Wednesday morning. Dr Wheeler is happy with his abdomen and how his organs have coped with the radiotherapy. They wanted to arrange scans and follow up appointments every three to six months. I mentioned Dr Downie was scanning every three months, no need to double up, happy for an appointment in 6-12 months. On leaving, an appointment was made for the 7 June 2006! (Dr Downie can correspond with them if there is a need before the 12 months!!).

He has another GP appointment today as his ear is still oozing. I am assuming more antibiotics. He still has no pain and has not had any temperatures.

Respiratory - Annual follow ups
Radiotherapy - Annual
Cardiology - every 6 months
Oncology - every 3 months
Paediatrician - every 3 months
Speech - weekly
Music - weekly
creche - weekly
GP - too bloody often!

But he is getting there.

june update

Since the last entry Ethan has had a couple of respiratory appointments. Dr Armstrong changed the asthma preventer (seretide instead of flixotide). This has helped, he hasn't had a major attack since. He was also commenced on a nasal spray for a month. I thought this would be awkward to give as most kids don't like the feeling of it, but I tell him it's time for the spray and he points to where it goes and after the first nostril he points to the other nostril. He is very good when it comes to taking medicines. Dr Armstrong is happy with his progress and has put Ethan onto annual appointments!!

The oncology appointment went well. The abdominal ultrasound and chest xray showed no signs of cancer. The chest xray showed that his heart was bigger than average and that he has had heart surgery...it is amazing after all this time that the xray people finally comment on such abnormalities!! The blood test was normal other than the alkaline phos which is still extremely high. Dr Downie is happy with his progress and we don't need to see him for 3 months when he has the same tests all over again.

Ethan developed a cold which increased the amount of snot, it started oozing from his ear! The GP diagnosed another perforated ear drum (same ear as last time). He has nearly finished his antibiotics and his ear is still running like a tap. He wasn't having fevers or he wasn't in pain, the only reason I knew was because of the ooze from his ear. He is quite a strong little boy.

Music group is going great. He enjoys going and he has even started to do the messy play. We are still waiting for the developmental check. It has been put on hold a little as the lady who runs the music group is one of the ladies who comes out. She advised us to start him in creche, this will help his social skills (advance his talking and play skills). On a Friday he goes to the creche up the road. He is in with the pre kinder kids. The first day was hard for me to leave him as there was a room full of big kids playing and little Ethan watching, none of the kids knew what he was signing! I knew the first day would be hard for him. The creche has been very supportive and have worked really hard to make him feel welcome. They have had training in makaton signing and have also learnt some of his made up signs so he has fitted in quite well. He has adapted really well and loves going.

He hasn't been to speech therapy for a while now. He will have a session next week. This will be good as he is now trying to babble a little so hopefully we can get some exercises that aid this.

The plan is for Ethan to complete 2 terms of music group and finish out the year at creche and then next year he will attend the Dandenong Valley Special School early intervention program (2 full days) and also do "normal" kinder (10 hours). So he will be very busy developing and catching up. This will depend on the final outcome of the developmental check but that's what is advised at the moment.

Evil Canevil graduated from the small chairs to the kitchen chairs, couch and coffee table! He has really started to climb and be more active. I try to encourage him to play outside on his bike or on the slide but it has been too cold especially with his ear. He eggs Adele on and vice versa, they are double trouble. We have two naughty mats!!

Finally here are some photos.....



Evil Canevil - leaping off the chairs



First post-chemo haircut



Tucked in to his new Thomas bed, thanks to Leisa

evil canevil

Ethan's paediatrician appointment went reasonably well. The alkaline phosphatase is even higher, it's above 4000 now. The blood tests have indicated that it is coming from liver not bone as first thought. The paediatrician isn't too fussed and he seems to think it will come down by itself.

Ethan has follow up appointments over the next month, (with all of his doctors) so we will get to the bottom of it.

Ethan has an appointment with the respiratory doctor tomorrow (Dr David Armstrong). The snotty nose is still hanging around playing with his asthma. It is a part of his everyday life, lucky he knows no better!

His oncology appointment (Dr Downie)is next week. The usual tests have been ordered; Blood tests, abdominal ultrasound and chest xray. This is always a nervous wait, even though they don't expect to see anything!

He has a cardiac appointment (Dr Jim) on 7th June, Radiologist appointment (Dr Wheeler) on the 8th June and another paediatrician appointment (Dr Smith) on the 29th June.

We are still waiting for the developmental/speech check. This should also be carried out during the next month.

Hopefully after all these appointments, everything settles down and we have all the answers!

He is still attending speech pathology and music group. He enjoys these and is making progress.

A physiotherapist review was carried out. Ethan is coming along well in this regard. The foot drop is getting better and they don't need to see him again. He has become a lot more active. He rides, runs, jumps and dances. He is also quite a little dare devil. The other day he pushed all the chairs to the kids table in a row (1-4), placed the little bob couch at the end of the row, went outside grabbed his bike helmet. He then proceeded to climb up chair one, he ran across all four chairs and dived onto the couch. I had a heart attack and he had a laughing fit!

He has also learnt to climb. Hopefully he doesn't graduate from the small chairs to the dining table!


(photos of evil canevil will be posted soon!)

still waiting

Not much has changed since the last entry...

We are still waiting for special services to perform a developmental assessment. It is annoying as we can not plan the next step. We need to work out early intervention programs and kinder programs based on their findings.

He has received a place at the Dandenong Valley music playgroup. There are two early intervention teachers and the program is designed to help speech. The first session was on Monday. All 6 kids are delayed (in two or more areas) but for many different reasons. Very interesting! Even though it is quite a loud and disruptive group, Ethan enjoyed himself.

Ethan has had more blood tests. The alkaline phosphatase is still elevated. We have an appointment with his paediatrician next week to discuss it. I am assuming it isn't any higher as no news is good news. We know it is still high due to the time it has taken to measure it in the lab.

The viral chest bug is still hanging around. He has had it for 7 weeks now. He is still having intermittent temperatures of 40 and is now onto his 3rd lot of antibiotics. Hopefully these do the trick as I am pretty tired from spending hours with him trying to reduce fevers and settle him in the middle of the night.

His Hb is now up to 150. He is full of beans and starting to be a real little boy, (when he doesn't have a temp) hopefully because of the rise in Hb and not from copycat learning during his music group!

Another issue

Special services came last week. They overloaded us with information regarding different programs and groups that could benefit Ethan. They are going to perform a developmental assessment and referrals to speech pathology and a physio have been done. After all this, we need to research all options and work out what is best!

The 'make a wish' foundation also gave us a visit last week. They delivered a box full of toys for Ethan and some things for the girls too. It was a pretty exciting. We all had a good morning.



We have also seen the paediatrician. Ethan's alk phosh is still elevated but all of the other blood tests are normal. A huge relief. The paediatrician diagnosed hyperalkalinephosphatasia or something like that. In our words..an elevation of his alk phosh, in conjuction with a virus. It usually occurs before the age of 2 and can take up to 6 months to recover. Ethan will need regular blood tests to monitor it but hopefully it comes down by itself soon.

His asthma is still all over the shop. He has been commenced on a 9 day course of prednisolone and is requiring his ventolin regularly. Hopefully the prednisolone kicks in and he can get over the viral chest bug which is still hanging around.

The Easter Bunny found the kids in Castlemaine this year.

more time in hospital - chest infection

Last Thursday morning Ethan did his blue trick. He had had a cold for a week and had started coughing. His ventolin wasn't getting any results, doctor mum diagnosed viral pneumonia so another visit to Monash.

He was admitted at Monash with an exacerbation of asthma due to a viral respiratory infection. They also found he had an urine infection. They commenced IV antibiotics (After numerous attempts to put in an IV) They also sent off the usual blood tests. He had a chest Xray. This indicated his heart wasn't abnormally big, and that he had a chest infection. It also showed his bones were good, but he would still need to have the follow up blood tests.

The blood test came back and his alkaline phosphatase was quite high. My understanding is that it is usually below 500 and his was 1600. He was ordered more tests to try and work out why. The liver and bone can both cause this level to rise and due to his cardiac condition and his oncology both are a possibility. They also repeated the level to see if it was coming down but it had gone up to 2400.

The cardiologist reviewed him. They thought it was unlikely liver due to cardiac complications because there were no other indications, so it must be bone. Another doctor came and ordered more blood tests. To check his calcium and vit D levels and also to do all of the follow up bone and parathyroid blood tests that he was going to have because of the Xray back in Feb. He also spoke to the oncologist about the possibility it could be cancer. The oncologist came, they thought it was unlikely cancer because his kidney ultrasounds and chest xray have been good.

Ethan picked up after a lot of ventolin and some prednisolone and late Saturday we were discharged. I had to make a paediatrician appointment to follow up the blood work. I couldn't get in to see Chris Smith so we went to the GP. His alkaline phosh had gone up again to just over 2500 and the other results weren't back yet so we still have no idea what is causing it. We are hoping it will just come down by itself and that it is nothing but at the same time there is the chance it could be cancer in the bone.

Special services are coming this morning. I will let you all know what is happening with that and post some more photos later.

review and holiday

A lot has happened since the last entry.

On the 22nd of February Ethan had a follow up xray, abdominal ultrasound and blood test. He was given the all clear. His blood test revealed his Hb was in normal range but too low for his cardiac condition. He subsequently has commenced a 6 week iron supplement program to boost this to about 170-180. We went home feeling pretty positive about things only to hear that his chest xray revealed his bones looked too thin. This meant back to Monash for wrist, tibia and ankle xrays. These xrays were all clear, but another blood test is required at his next 6 week review. This visit coincided with an audiologist consultation. Hearing was checked and found to be normal - green light for speech therapy.



Ethan with the boss man - Dr Peter Downie

Ethan is currently enjoying a family holiday in Pambula Beach and Canberra. He seems to have progressed in the last week and a half. He is eating and drinking well. There is no chest wheezing. His toilet training is also good.



Catching up with Nanna Hanna before the holiday



Soaking up the rays



Playing with the roo's



One of many trips down the toboggan

happy snaps

Sorry about the delay!

Special services have been in contact with us. It is going to take about 8 weeks until they can assess the little man. They tried to push us into another speech group but I insisted they do an assessment.

I took him to a speech pathologist. He needs a ENT referral to make sure he has the ability to make the sounds needed for talking. We are in the process of this.

He has now begun full toilet training. Day 1 of training today, 5 hits and 3 misses.

special services

Ethan has had a paediatrician and health nurse assessment over the last couple of weeks. He has grown a little with height and weight. He is tiny compared with other three year old boys, but more importantly he is still taller than Adele! (Not sure for how long, 0.3cm between them).

It has been decided that he needs a pretty intense year developmentally. Both the health nurse and paediatrician have referred us to Victoria Special Services. This service offers a range of specialties from speech pathology, physiotherapy, special kinder programs etc. We now have to wait for the assessment, this could take up to 6 months! The assessment itself is a couple of hours. In the meantime we were advised to pay for private speech therapy.

He needs to have his hearing tested again (As a package for special services). The earliest this can get done is in May. He had it tested on 3rd April, 2003 and it was good, so we can't imagine it being any worse than that! The recent ear infection has gone and his ear drum looks good.

His hair is growing back fast. We are still not sure of the colour. Sometimes it looks pretty blonde and fair and sometimes it looks ginger. It is pretty soft and fluffy unless I spike it with gel!

He is showing signs of toilet training. We have caught a couple of wees on the toilet. Pretty exciting for all involved.

I have a record of Ethan's hospital admissions. Here are some stats...
I'm not too sure how many days have been spent at the GP, health nurse, paediatrician, cardiologists, oncologists etc, but he has had 67 hospital admissions, a total of 280 days, 10 of those days have been spent in intensive care...and he has just turned 3!

HAPPY HEART KIDS DAY, I hope you have all bought some stickers for the cause!

I will post some photos later tonight for those who want to see a recent snap.
Cheers, Jo

ear infection

Ethan has had a snotty nose and has been chesty for over a week now. This usually causes concern about more asthma. We have been lucky that his asthma care plan has worked. He has been having ventolin every four hours. The snot he was producing was running like a tap. He was even getting conjuctivitis. Nothing too concerning, this is quite normal when he has a bug.

But what is normal. On Saturday we couldn't see in Ethan's ear. He had huge amounts of pus oozing from it. A visit to the doctor diagnosed acute otitis media (an ear infection). The pus and fluid produced in the middle ear caused a lot of pressure and ruptured the eardrum allowing it to drain into the ear canal. He has been commenced on oral antibiotics and ear drops that contain an antibiotic and a steroid for anti inflammatory purposes. They took a swab and has a review next week.

The doctor was asking about pain. It usually has fair bit of pain associated with it. I remembered he let out a pretty loud squeal while shopping. He pulled at his ear (which is a habit of his at the best of times) and had some blood in his mouth. As he was eating at the time, I thought he had bitten his tongue!

cardiac review

Ethan had the long awaited cardiac appointment yesterday...

After his cardiac catheter in December Dr Jim felt they would push on and close his VSD and increase the blood to his lungs by changing the conduit, but after many discussions with the surgeons they have decided not to put him through surgery just yet. The surgeons believe they can't close the VSD safely at the moment. They also believe the blood flow to his lungs is adequate enough to get by, so they don't want to change the conduit either. They would prefer to hold off and hopefully do it all together in one go at a later stage.

We spoke to Dr Jim about Ethan's asthma being pretty active and unfortunately kids with his type of cardiac condition have asthma. We were given another couple of ventolin scripts!

His weight is down since December but he has grown a couple of centimeters. Dr Jim isn't concerneed, it is quite normal and 3 year olds don't put on a lot of weight.

Next cardiac review is in 4 months. Oncology review coming up on the 22nd Feb.

three

Ethan has remained wheezy on and off since our last hospital admission but nothing a few puffs of ventolin can't fix!

We had the follow up appointment as planned and the docs are happy with him. They don't need to see him until the 22nd of Feb. He will have an ultrasound and xray as routine follow up on this day.

At the time of the appointment, he had put on 100g and grown nearly 2cm. He is still eating by himself without the tube and is managing quite well. He decreases his intake when wheezy but we just add more calories to compensate.

His cardiac appointment is not until 1st Feb. It is a long wait considering how blue he goes sometimes but at the same time it is good to be home. Catch 22 really. I have spoken to Dr Jim a couple of times and if we get concerned (more than usual) we are to take him to emergency.

Ethan had his birthday yesterday. He is now 3, kinder next year and then school! When looking back at all that has happened it is hard to believe he is only 3. We all had a good day and Ethan was impressed with his presents.



nude drummer boy



Is there money inside??



BMX bandit



Ethan could have his Thomas and eat it!

christmas/new year

Ethan has slowly increased his eating and drinking. A couple of days before Christmas I decided it was time.....I took the tube out. He has managed to have enough oral intake that he has put on some weight and has grown. It is good to see him eat after all these months.

Ethan developed fevers Christmas eve but under no circumstance were we going to hospital. An executive decision was made and I increased his prophylactic antibiotic for a few days. Did the trick and Santa found him!











Today Ethan woke early and he appeared to be in a lot of pain. After some panadol and a cuddle he settled and slept until he woke in more pain. More panadol, this time he didn't settle. Another MMC admission.

On arrival he was still in a lot of pain, his oxygen levels were in the 60's, his heart rate 170, he was breathing high 40's with a lot of effort. There didn't appear to be any reason. His tummy was nice and soft to touch even though it looked bigger, his chest sounded clear and he didn't have a wheeze, he wasn't snotty or didn't have a cough etc. The doctor ordered blood tests, snot test, wee test and x rays.

The x ray showed some changes. Ventolin was given. After the ventolin Ethan was very wheezey. We were admitted with asthma. I don't know why he wasn't wheezey before the ventolin and the doctors couldn't explain it either but it has been seen before. The ventolin must help trigger something. He was having ventolin every 20mins. This made him pretty hyperactive!

After some steroids and more ventolin I asked to go home. I can give ventolin at home. They were OK with this. We have to go back on Tuesday for review and he is to have 4 hourly ventolin before then. If there are any problems we are to go back earlier.