Consenting to the procedures

I am finding this decision quite stressful, particularly because Raphael's Paediatrician was away at this time. In my mind I kept going over the pros and cons (as I saw them) of doing each of these procedures. The following were the major points that effected my decision on each procedure:

Grommets
Grommets pros:

• Good chance to improve hearing and therefore verbal and communication skills. I believe that Raphael is at a critical age with regards to learning communication and I am doing my best to learn Auslan (sign language) and sign to him whenever I talk to him. But verbal communication could give him so much more in life and so I am very keen on doing all that I can to allow him to do this.
• Tubes are automatically discharged after six to eighteen months. This means that he won't necessarily have to have an operation to remove the tubes when they are no longer needed.
• No longer have to worry about damage to facial nerve due to pressure build-up in the middle ear.
  

Grommets cons:

• Increased risk of ear infection. I believe that these can be adequately fought with antibiotics and, in the worst case scenario, another surgery can be done to remove the tubes should they prove to be causing more problems that what they are solving.
  
• His ear tubes may vent his secretions. Although this may be only aesthetic, this can also lead to an increased risk of ear infection. I don't want to down play the aesthetic nature of this too much; it saddens me to admit that Raphael gets less kisses and slightly different cuddles than my other children received from me because of his copious slimy secretions from his nose. I have to assume that if his ears leak goo, then this will also change the way in which I show affection to my son.
• Tubes are automatically discharged after six to eighteen months. I realise that I also listed this as a pro, but if the middle ear fluid problem persists after this time is up then he may need to have another operation to fit new tubes.
  
• Requires a short general anaesthetic, but this still has higher risks for Raphael than for most children. The biggest disasters that I can imagine coming directly from this procedure are death, brain damage from lack of oxygen, and/or potential irreversible damage to ears. I see the risks of these events as real but very very small
  

Grommets decision:
I believe that the risk of not doing the operation outweighs the risk of doing the operation. We have decided to consent to this procedure.

Video of fitting grommets that I found on the web

ABR (under general anaesthetic)
ABR (under general anaesthetic) pros:

• Achieves a high likelihood of accurate results which can be used to programme Raphael's future hearing aids accurately.
• Doing the test at the same time as other procedures means that there is some benefit in not having to have multiple GAs.
  

ABR (under general anaesthetic) cons:

• ABR can be performed without a general anaesthetic. But in this case there is no guarantee that it will be possible to gain accurate results; and past experience shows that it is unlikely that good results will be obtained while just sleeping.
• The procedure takes about an hour. This is a long time to keep him under GA.
  

ABR (under general anaesthetic) decision:
This was a hard decision. I would prefer to be able to ask more questions from Raphael's paediatrician about possible alternatives before I commit to consenting to this procedure but for now I am happy to trust the ENT doctor and anaesthetists opinion and skills on performing this procedure.

CT scan
CT scan pros:

• This will be able to reveal more information with regards to Raphael's cochlea and middle ear ossicles. It would be nice if something could be found that can be corrected; I am sceptical that this will be the case though.
• Having the CT scan now means it is combined with other procedures under a single general anaesthetic.

CT scan cons:

• He needs to have a general anaesthetic.
• He needs to be transported from radiography to the surgical area while under anaesthetic.
• He will be subjected to another dose of radiation.
  

CT scan decision:
We have already consented to having this test done in the past and my opinion hasn't changed. I would like to do as much as we can to improve his hearing and if the specialists believe that the risks are manageable then I am still in favour of this procedure going ahead.

G-Tube
Thank goodness I don't have to make a decision on this one any more. I still have lots of unanswered questions about having a procedure to fit a G-tube. The main outstanding questions that I have are regarding what type of g-tube is best to be fitted, the method used to get it in place, and whether a fundoplication is also necessary for him.

I have found a video of someone performing a PEG (one of the three ways that I am aware of inserting a G-tube)


Summary:
I would like the three procedures (grommets, ABR, and CT scan) to go ahead. Even if the outcome is the worst result, I believe that I will be able to say that I carefully considered my son's future life and made the decision to the best of my ability with the best advice that I could find.

Prayer is the only thing left for me to do now.