Matty's Blog

Matty's Blog

A story about Matthew William Jones

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Grumbles

Matty has been quite grumpy over the last 24 hours. He has been having trouble getting settled in his cot, so Mum spent until two in the morning trying to get him happy and quiet. Mum suspects that it is probably a combination of the snuffles that Matty has been having – which is not caused by a flu as the tests have all come back negative – and Matty having a bit of gas in his lower belly. If the gas is in his stomach then they can aspirate Matthew using his Nasogastric Tube, but when it is lower down then he has to expel it the ‘usual’ way.

The respiratory doctors also have concern that Matthew is using such high amounts of oxygen to keep his blood oxygen saturations up above 94%. They will be performing an echocardiogram within the next few days to see if it is caused by Pulmonary Hypertension. Mum and Dad are not too concerned with this, as they have heard that the respiratory doctors are quite strict with what they consider a desaturation. They admit children with ’severe desats’ of 91% into intensive care, while both the intensive care nurses and doctors do not consider this as a severe desat – more looking for the ones like Matty used to do – down to 50% or more. They have just moved the bar up higher and Matty will learn to remain above it as he gets bigger and stronger.

By the way… Matty has not only hit 4kg, but has jumped to 4.17kg. If Matty’s safety in air test is still happening tomorrow (no confirmation from the head nurse yet), then it may be a very big day. We may have Matty home by mid next week or we may be continuing the fortnightly tests, depending on the results. Good luck my little champion!

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