ENT appointment in RHH

See the end of "A CT Scan story" 15/1/2007 for a description of this consultation

A CT Scan story

Raphael had his CT scan in rather strange circumstances. He was originally booked to have his CT scan on a Tuesday but then on the Friday before we received a phone call from the hospital saying that they weren’t going to have a Paediatric Anaesthetist available on that day and wanted to change the booking date to the Preceding Monday.

Annie has been really worried about this General Anaesthetic (GA) for him and has been wanting to have the test done while he is sleeping instead because she read that it is possible to conduct CT scans on infants that are sleeping and it may not be necessary to give them a GA. But every doctor that we saw dismissed it as not worth doing because any movement renders the CT scan worthless and it would have to be done again. (The radiation Dose from a head CT scan is about 2 millisievert (mSv) which is about the same dose as an Australian would get in normal life (background radiation) over a year)

On the Monday we went in and were admitted to day surgery, we hung around for a little while and then an anaesthetist came to us (we have met her before, but I can’t remember her name) and she said that the Paediatric Anaesthetist was not available today because he was unwell (actually he had walked into a pole and injured his eye). She suggested that we go home and make another booking.

So at this time we had a CT scan machine and crew booked and a really sleepy baby but no anaesthetist. Annie saw this as her opportunity and so she begged the Anaesthetist to arrange the CT scan with a sleeping baby instead of having a GA. The anaesthetist was hesitant but eventually agreed to try to help us have the procedure done without anaesthetic. She then made a long phone call to the X-ray department to try to convince them of performing the procedure. While she was on the phone Annie and I wondered whether God had hit the Anaesthetist with a pole so we could do this without a GA. We laughed about the possibility but then felt sorry for the poor guy who had hurt his eye. Eventually she returned and advised us that “they” agreed to do the procedure with a sleeping baby.

The radiographer met us down in the X-ray department and ushered us to a waiting bed behind a curtain where the lights could be dimmed to help Raphael get dozy. We had a short wait while another patient was having a CT scan and then just as we were about to go in the radiographer came out to tell us that the radiologist did not want to perform the scan on a sleeping baby because there was practically no chance of the image turning out as babies of Raphael’s age move in their sleep a lot. Not to be deterred we asked to speak to the radiologist and he kindly came out to talk to us. When we told him about our fears of a high mortality rate of CHARGE babies under GA he agreed to perform the CT scan.

The normal high intensity lighting of the CT scan room was turned down only to leave the ambient light coming in from behind the lead glass shield for the operators and the LED lighting of the science fiction like CT scan machine (shaped light a donut) including a laser light cross on his head. We didn’t take any photos in there as we did not want anything to risk anything to disturb Raphael. It is doubtful that a photo could have captured the mood in the room anyway. Raphael’s tiny body was gently strapped down to an adult sized bed and Annie stood over him feeding him a bottle of hot milk coaxing him off to sleep. It was a very different send off than the MRI anaesthetic where he was held down kicking and screaming by three people while the anaesthetist and his assistant unsuccessfully tried to get him into a GA sleep.

He fell asleep after one and a half bottles of hot milk. At this time the radiographer decided that it was a good time to insert the head supports (why she didn’t do this before was a bit of a puzzle to me) but he didn’t stir at all and finally everyone left the room except for me in a lead apron and Raphael lying on the bed. The room was dark and quiet and even Raphael was not making his normal snoring sound (for those of you who have not heard him, he is always making a snoring sound even when he is awake). The bed whizzed his head back and forward through the donut hole and finally slowly passed his head through the machine that seemed to take about a minute. Through all this time he was perfectly still.

After it was all done we took him back up to the day surgery and waited to hear whether he had been still enough for the CT scan results. I was sure that he must have been because I was convinced that he had not moved at all, but unfortunately the message finally came up that there had been some movement and they weren’t sure whether the resolution was good enough.

After a subsequent visit to an Ear, nose and throat doctor (25/1/2007) more than a week later (in the Hospital) about his hearing problems the ENT said that they could see from the CT scan report and from clinical inspection that he had fluid in his ears that is almost certainly interfering with his hearing and that he could need an operation to insert ear grommets in his ear. Apparently this operation requires a General Anaesthetic (sigh). We again told her about our concerns about General Anaesthetic and asked her if the repeat CT scan could be performed at the same time. She thought this was a good idea and said that she was sure that she could arrange it. In addition to this she also thought it was a good idea to do a thorough examination of his throat while he was under GA. So at least now we are going to have several procedures performed at once under the one GA.

(I still think that it was a bit extreme that God had to hit the Anaesthetist with a pole to prevent Raphael from having another GA)

January & February 2007 - Search for support

Armed this “very likely” CHARGE Syndrome diagnosis we started looked for more organised support and found a few things that we wished that we had organised earlier. Did you know that if you look after someone who is disabled or aged that you can get a “Carers Allowance” and possibly a “Carers Payment” from Centrelink (Australian Government welfare). This is turn opens up all sorts of possibilities for discounts on services because you now classify as a concession card holder. The financial benefits that we have found include:

• Carers Allowance
• Carers Payment
• Family Tax benefit changes
• Council Rates reduction
• Land tax exemption
• Aurora bill (Electricity) reduction

And that is just the financial side. There are also services such as:

• Early Learning Centre for disabled children
• Disabled Parking
• A Toy Library for special needs children
• Calvary health care children’s therapy services. This place offers integrated therapies for disabled children (eg speech pathologist, physiotherapy, and occupational therapy)
• All of this and I have still not mentioned the public health service provided by the Royal Hobart Hospital. Even though administrative mistakes are occasionally made, we are very grateful for the free expert services and high level of care that we get through the hospital.

Now we are looking for ways to spend this money to help our boy.

• We are in the fortunate position that it is not necessary for both of us parents to work to make a living and we are in the even more fortunate position that we can both work part time. So now Annie works two days a week and I work three to allow us to spend more time with all three of our kids. Losing a full time salary is of course a big financial hit but we were always planning on doing this for when our kids were little and so it is not a big deal for us.
• So far the only thing that we have spent money on (apart form medical expenses) for Raphael is toys; specifically toys that make noise. Have I mentioned that I hate toys that make noise? Well this is a sacrifice that I am going to have to make. We have a reasonably quiet house otherwise and with his hearing loss we thought it would be good to get some noisy toys so he could get some auditory stimulation apart from us just talking and singing.
• We are thinking about hiring some older kids who sign Auslan to play with him for an hour a day or so although we are not really sure how to go about doing this yet. Not to mention that it feels a bit odd to pay someone to be my son's friend.

An email from the geneticist

After doing some reading on CHARGE syndrome, Annie was convinced that Raphael had CHARGE. She emailed the geneticist to ask him about what she had found and he replied saying that he had gone over the MRI in more detail and he now thought that it was “very likely” that Raphael had CHARGE.

Ophthalmologist

Another Ophthalmologist visit confirmed that his left eye has Retinal Coloboma but his right eye clinically appears to be normal.

He said that there is nothing that can be done for Raphael's left eye but it is important to monitor his right eye to make sure that one remains ok. There were signs of high pressure but the figures are still currently within the safe upper limits.