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Managing Alex's congenital cholesteatomas

Published Date: 07 May 2020

Side by side images of a little boy lying in a hospital bed with a bandage around his head and the same boy kneeling on the bed giving a thumbs up

In my last blog we were waiting for Alex to have his next operation to remove a cholesteatoma. Alex had suffered from congenital cholesteatomas, which fortunately were removed by going down the ear canal. This time he had a recurrent cholesteatoma which had grown deep into the ear bones, so would have to be removed by going behind the actual ear and through the mastoid bone.

Additionally Alex also had a hole in his ear drum, left over from a previous grommet insertion, so the consultant would also take a bit of cartilage from his ear and graft it closed creating a new ear drum.

To tell you the truth we were dreading this operation, actually having to go through a bone in the skull and the scar it would leave filled me with dread. We had hoped we could have left the grafting of the ear drum until he was older but the new cholesteatoma forced us to act earlier.

Having your child operated on, in any circumstances, is an unpleasant experience but operating on a young child, like Alex, throws in further complications. They don’t fully understand what is going to happen. Why can’t I be at home in my own bed? Why is Mummy letting these people put me to sleep again? Why do I have this massive bandage round my head? But the worst question is: Why am I waking up in so much pain?

This must all sound like doom and gloom and I’m not going to lie, it’s challenging watching your little one come round from the anaesthetic crying and in pain but within two hours (and several ice lollies later) he was laying in his hospital bed watching Toy Story. His pain under control with pain killers and the only thing that really seemed to be bothering him was the head bandage. By tea time he managed to polish off a bowl of pasta, chicken nuggets and chips and some ice cream! The following morning, the consultant came and removed the head bandage and hey presto Alex was bouncing off the walls again and chasing another child round the ward.

Alex had to spend two weeks away from nursery, to avoid infection, then he had to go back in to be anaesthetised for the packing inside the ear to be removed. This highlights one of the challenges of having a younger child, an older child or adult could have had the packing removed in clinic; but a four year old has to be anaesthetised to ensure they keep still during the procedure.

Two months on from the operation Alex is doing well, the scar is very neat and not very noticeable. Due to the Covid19 crisis we haven’t seen his consultant to get the all clear to put the hearing aid back in that ear, as he needs to check its condition. So at the moment he’s just relying on one hearing aid, which is a bit challenging.

Alex’s next challenge is starting Reception in September, I’ve just emailed over a list of adjustments that are needed so we’ll let you know how it goes!

Maria

Maria and Scott are parents to Alexander (4) and his sisters Emilia (6) and Evangeline (10 months). Alex has bilateral moderate hearing loss and wears Batman hearing aids!