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.

cardiac catheter (and the wiggles)

The bone scan is all clear :)

Ethan was pretty good over the weekend and was admitted monday morning for the cardiac catheter. He had the usual pre op tests (echo, ecg, chest xray, blood cross match and fbe) before going under at 2pm. A catheter usually takes around 2 hours but after 4 hours a nurse came out to say things were fine but progressing slowly. Half an hour later, Ethan's cardiac doctor came out and said it took a while because they had been trying to balloon a narrow part of his pulmonary artery. He told us Ethan's pulmonary artery has grown well but there are sections closer to the lungs which are narrow and will have to be looked at with either more catheter procedures or surgery. There is restricted blood flow at the conduit also. He says things are pretty positive and heading in the right direction, but they need to get the blood flow to the lungs right before they can close his VSD.

All the information gathered from the catheter will be taken to the cardiac surgeons on monday for discussion and they will let us know what they decide soon. It is likely that cardiac surgery will be required early in the new year.

Ethan recovered slowly from the lengthy procedure, as he was pumped with more fluid and had extra contrast in his system. The contrast slows kidney function which stopped him weeing. An in/out catheter was given to get things going again, so discharge was wednesday morning.



Never a big fan of the ECG



He loves a sleep during an echo



Rode the bike between appts at the RCH





Waiting around with Bob and Scoop



Spaced out after the midazalam pre-med

For the moment, our next appointment is on the 4th of January with Ethan's onc doctor.

We were lucky to be offered 4 sets of tickets to the Wiggles Christmas show at Rod Laver Arena on thursday. Thanks to Peter Mac for the superbox seats and the Australian Cancer Institute.