Wednesday, June 29, 2011

Sudden onset of squint

(A few days before going to hospital. The squint is not that noticeable here as it was coming and going. )

This is a quick note to update you on our week. I'll be doing a longer post about it soon as it will be therapeutic for me to write about it but here is a shortish version.

About 13 days ago, our little girl suddenly developed a 'squint' - by that I mean that one of her eyes started turning inwards so that she looked cross eyed. I immediately knew that this was potentially a very serious medical situation and took her to a hospital to be assessed. To cut a long story short, it took six days, two hospital visits, two GP visits and a visit to a paediatric eye specialist before she was properly assessed. The specialist found that her optic nerves at the back of her eyes were 'swollen' indicating that she had increased intercranial pressure. This means that the pressure in her brain was rising for some reason - possibly a brain tumour, haemorrhage, abscess etc. It then became an emergency sitation and we rushed to hospital. After 30 awful hours that included an emergency MRI (for diagnosis) and lumbar puncture under general anaesthetic (to check for infection and relieve some of the pressure on the brain) they found a 2-3 cm blood clot had blocked off one of the veins that drains the cerebral spinal fluid from the brain, causing the CSF to build up in her brain - causing raised intercranial pressure which caused the optic nerves to swell. She was given (and still is on) serious drugs to reduce the brain swelling and stop further clotting and this has worked very well. After 7 days in hospital, we came home last night, still on the drugs which include injections twice daily to reduce the risk of further clotting. She is out of danger and the brain swelling has mostly gone but her optic nerves are still swollen. We went back to hospital today for her to be reviewed and they were very happy with her. She needs another brain scan on Wednesday to see if the clot is gone yet.

The clot was caused by an ordinary middle ear infection which caused inflammation in the vein near the ear which drains fluid from the brain - a very rare complication.

Obviously, it was a very serious condition but as we were facing the very very real possibility of a brain tumour diagnosis, we were absolutely ecstatic that it was 'only' a blood clot. We had an absolutely out of this world medical team taking care of Greta - well, actually - several medical teams. We had a team of eye specialists looking after her eyes, a team of neurologists looking after her brain (they were in ultimate charge), a team of ear, nose and throat doctors making sure the underlying infection in her middle ear/mastoid bone was cleared up and a team of haemotologists supervising the drugs for the blood clot and clotting issues. We actually saw one of the top neurologists in Australia soon after we arrived, who has been working in neurology since the 1950s and retired this week. So we were extremely lucky to have him in charge. He was an expert long before the technology of MRI, CT scans etc and was able to tell us what he thought the most likely diagnosis was based on her symptoms/history before it was confirmed by the MRI. (The longest 30 hours of my life while we waited to rule out brain tumours).

I want to reassure everyone that she is doing really really well and say an enormous thank you to all our wonderful family and friends who have been supporting us with love and meals and visits to hospital and helping take care of my big girl while Gret and I were in hospital.

I am veering from elation at being home to exhaustion, but it is all good. She is safe and sound and in a few more weeks, we can hopefully be finished with the drugs and procedures and back to normal life.

If anyone out there happens to google "sudden onset squint" (as I did) and finds this post, PLEASE if this has happened to your child (or you), get an immediate medical assessment as it is potentially a symptom of a life threatening condition. One of our neuro specialists described it as a "red flag" event.
Will post more soon including a photo of my girl with the turned eye so you can see exactly what I mean. Her beautiful eyes now look normal again and her vision does not appear to have been damaged. The swelling of her optic nerves is going down and should continue to go down over the next few weeks.

Tuesday, June 14, 2011

Weekend at O'Reilly's Guesthouse

Back in May, we had a wonderful weekend at the famous O'Reilly's Guesthouse in Lamington National Park. It has a quite a history as it was established by the O'Reilly family on their dairy farm as a guesthouse back in the 1920s. Lots of lovely historical photographs on the walls of the guesthouse for the historians in our family to pore over. The reason we went was to celebrate my Mum's 75th birthday. My sister and her family went as well as my parents and it was the first time we have all had a holiday together since we were children. (Only downside was that our brother and his little family couldn't come as well). Luckily, we all had our own accommodation and space and couldn't drive each other nuts!

Our girls were so excited about going away with their cousins and seeing the rainforest. It was a two hour drive from our place and the last half an hour or so was going up quite steep winding hairpin bends which I found pretty hair raising. It was a relief to get there and have our first walk in the rainforest.

The guesthouse is quite a big complex with a central lodge type building with a restaurant, cosy bar, games room, fireplaces, shelves of books etc etc. Then there were separate buildings for accommodation all of which had gorgeous views of the mountains and valleys. The most wonderful thing was no phones, no TV, no computers and no proper mobile reception (though we did manage to be text each other and say things like "What time are you going to breakfast". It was SO peaceful! Speaking of was an absolute feast. All you could eat from the menu or the smorgasbord. That's my kind of breakfast! The second morning, breakfast was outside, complete with chefs cooking eggs etc and all the other breakfast goodies you could wish for. It was chilly but we rugged up and just ate extra to keep our bellies warm.

The rainforest was just magical.

Here's my big girl communing with a mossy boulder. She was in seventh heaven and got completely hooked on birdwatching. She soon knew the names of the local birds flying about and their habits and was especially fascinated with the bower birds and their nests fall of blue treasures.

Although not ecologically PC, O'Reilly's has special permission to feed the local birdlife as it has been done for so many decades that the birds are dependant on it. The crimson rosellas were another special favourite of my big girl.

My little girl was not so keen and preferred to stay outside the feeding enclosure with her Daddy.

My big girl even got to hold a barn owl which was an exciting experience.

Even though the weather was sometimes overcast and misty, the view was just gorgeous. So relaxing to just look at it, breathe in the clean mountain air and listen to the birds.

It was extra special to be with my extended family. Life is so hectic for everybody, it was wonderful to just talk and walk and eat and laugh and play board games together.

Thanks for having us, O'Reilly's. Hope we come back soon.