Thursday, 30 November 2006


Our paediatrician has finally gave into Raphael’s stubborn feeding problems and ordered him to hospital too have a Nasogastric tube (NGT) insertion and setting up a night time feeding regime.

Tuesday, 28 November 2006

Another Kind of Barium swallow attempt #2

This time it went well. Tube in, down to x-ray, short wait, the correct radiologist was there (phew) and the barium swallow was done with the appropriate x-rays. The result was even good news (not something that we were used to getting). There was no communication found between the oesophagus and the trachea.

Friday, 24 November 2006

Another echo cardiograph

Another echo cardiograph confirms that he still has an Atrial Septal Defect (ASD).

Saturday, 18 November 2006

Eye behaviour

The eye behaviour doctor visited again and armed with the information from the ophthalmologist made further recommendations on how to exercise Raphael’s eyes and warned about watching for certain potential developmental problems.

Friday, 17 November 2006

Thursday, 16 November 2006

Another Kind of Barium swallow

We arrived at the Paediatric Ambulatory Care Unit (PACU) on time to have the tube inserted for a barium swallow test but after waiting for a short while a nurse came out and sad “You are not supposed to be here today, it is for next week”. After a short some verbal negotiation she went back to check her calendar again and came back admitting that it must have been booked in her diary wrong as we definitely have a barium swallow X-ray booked for today.

We went into a treatment room and wrapped Raphael up in a blanket to immobilise his hands and then the procedure began. She measured the length of tube that she would need, lubricated the end of it and then slid it up his nose and slowly down the back of his throat. Of course he wasn’t very keen on this and thrashed his head from side to side (oops, I was supposed to be holding his head firmly to stop that). The poor boy gagged and choked and coughed and of course this made it all the more harder for the nurse to get the tube inserted. Finally it was over and the tube was tested to make sure it was in his stomach by sucking some bile out and testing it on some litmus paper.

Finally when we got to x-ray a puzzled radiologist asked us if we knew why he was asked to perform this procedure as the order from the paediatrician specified a particular radiologist was to perform the x-rays. He was very nice and very apologetic of the obvious administrative error that had occurred. After a phone call to our paediatrician, he confirmed that it would not be worth him performing the test. He informed us that his specialities were livers, kidneys, breasts, and penises and if we ever needed x-rays for these then he would be the man to see but the last paediatric barium swallow that he did was a long time ago and he would not be confident that he would be the best person to perform the procedure on Raphael. We agreed and were very civil about the whole thing, but afterwards Annie and I had a good rant to each other about the time that I had to take off work and the pain my boy had to suffer for no reason.

Friday, 10 November 2006

Audiologist appointment

Raphael had another Hearing test today called a "Hearing assessment using Auditory Brainstem Responses". Basically he was hooked up to a bunch of wires attached to his head and had a big set of headphones put on him and we then let him fall asleep in his pram. Then sounds were played through the headphones and the brain sensors looked for activity that coincided with the sounds. The findings of this test were that he had 40 decibel (db) hearing loss in one ear and 50db loss in the other. This effectively means that Raphael can probably hear us if we are sitting close and speaking in a reasonably loud voice.

Wednesday, 8 November 2006


The ENT did another laryngoscope. This time his nose was big enough to be the entry point (so it should be, I have an enormous schnoz). He said that he no longer thought that Raphael had laryngomalacia but that there was definitely something going wrong back there.

He said that if more information was required on his condition then it might be necessary to see a paediatric ENT Doctor (possibly in Melbourne) but he was going to let the paediatrician decide on whether there was any value in doing this.