I thought I'd post in here as now I know there is definately a "something" just not sure yet what it is!

Had a bit of a nigtmare in the RCH parking on the 7th floor and it has NO lift, so had to run down the ramps, tried the stairs and the wheel of my pram came off and I nearly satrting crying becaise I thought it was broken, but luckily I was able to put it back on! I mananged to get there in perfect time (thanks Christy for reminding me )

Well yesterday was Felix's appointment at the Respiratory Specialist at the Royal Children's Hospital in Brisbane (so the best person in the state to work out what is going on) and after examinations, asking me a million questions about my pregnancy Felix breathing and illnesses, another chest Xray, an oxygen monitor etc. (all over a couple of hours) He told me that it is still a mystery, and more tests will be needed.

What we do know is:
  • It's not asthma the noise in his chest isn't wheezy (that would be easy to treat apparently)
    There is a crackling in his lungs
    It's making him work hard to breathe and therefore affecting his weight gain
    He said it is a respiratory condition that is either viral or congential (he suspects either contacted shortly after birth or born with it) what the treatment is requires a diagnoses, which we don't have yet.


The next step is to totally eliminate all the things you can test for with minimal intervention, and then if nothing comes back then the next step will be a Brochialoscopy (tube down throat under general antisthetic) and a CT Scan at the same time. If nothing discovered there then a lung biopsy would be needed 8-[

Because Felix is doing okay (apart from the weight gain) the next time I will see him is in 5 weeks, were we will see a Cardiologist (just to totally rule that side out before we go down the invasive testing lines) and then discuss with the next step with the Respiratory Specialist.

I initially was very against the idea of a the brochialoscopy, especially while he is doing okay, and I said I'd talk it over with DP, he is also not happy about it, but as I talked about it with family I thought perhaps if we identify it while he is NOT majorly affected by it.

His growth is being affected as he has only grown 2 cms in 2 months and is now below his height line. We have been prescribed Glucuse Polymer which is pure carbohydrates to add to his food, to increase the KJ's, which is great as it doesn't mena he has to eat MORE just pump up the K's of what he does eat and I can add it to custard

The specialist spoke very positively about treament with the conditions he is looking at, like steriods that they use for asthma and things like antiinflamatory drugs..that may possible keep it under control..I really hope we aren't heading for a life time of drugs because they also have other effects.

Felix had a wonderful time in the RCH, all the dangly things and bright clours, and charmed the pants off all the nurses and Doctors, only crying when they held him down for more blood tests, I wore my Felix the cat T-shirt and we were called "team Felix" don't think I'll be doing that again

Anyhow, we get the results to blood tests he has had back in 2 weeks at the Gold Coast Hospital, and then we'll have to wait to see where we head from there!