Oxymetry study

Raphael stayed in hospital last night to confirm that his breathing is still ok over night.

The results were all good and so I think that finally marks the absolute end of his night time breathing problem.

ENT

Our ENT spent over an hour and a half with us today.

She examined his upper respiratory tract with an endoscope to confirm that there is no blockages that could have caused the poor oxygen levels during his last hospital stay. The only thing of note found in this endoscopy was the confirmation of his laryngomalacia.

Examination of the ears revealed a stenosis (extra narrow path) of the external ear canals and a chronic inflammation of the ear drum due to fluid build-up in the middle ear. [Previously in this blog I referred to this inflammation fluid as "otitis media" but I was told that that was an incorrect term.] Inserting grommets is still recommended as an attempt to resolve this inflammation (and associated conductive hearing loss). We were warned that because of the copious secretions in his throat, we may find that his ears may leak like his nose does. This is a potential infection risk that may require frequent ear drops.

We also discussed other procedures that could be done under the same GA:

• PEG insertion
• CT scan
• ABR test

The ENT also told us that getting two procedures done at once was very difficult, getting four together may be extremely difficult. The nurse in charge of booking the theatres and surgical teams gave us some of the reasons for this impracticality and didn't think that it would be possible to achieve. I still don't know if this is a good idea to do all of these procedures together as these other procedures will add a considerable length of time to Raphael's anaesthetic. I don't know what the best thing to do is anymore with regards to all of this, but I do know that want to improve his hearing as soon as possible.

We have another Australian Hearing appointment on Tuesday 3/4/2007 which I believe will be an opportunity to fit hearing aids.

Sleep study

Raphael spent two nights in hospital (Sunday and Monday night) to monitor his oxygen level while sleeping.

The first night showed very low oxygen levels, sometimes down in the 60s. The second night was much better only sometimes going down into the 80s.

Because his oxygen was so bad on Sunday night we had an appointment this morning with an ENT doctor in the hospital. As the oxygen was much better last night, the ENT visit was very short; really only to say that we don't need to do anything right at the moment. We have another appointment with the ENT on Thursday where we will have more time to ask questions about his throat and ear problems.

The nurses supposed that his position seemed to effect his oxygen intake. One said that when his head was tilted forward, his O2 levels dropped. I don't know if we will get a formal report from the sleep study. I suppose I'll have to wait and see.