Thursday, 24 March 2011

Evening update

We had a very helpful meeting with Arthur's consultant this afternoon.

He has very severe reflux which, whilst it shares the same name, mechanism and treatment as adult reflux: excess acid, irritated oesophagus and antacids respectively; is a very different beast in neonates.

Reflux can cause him to stop breathing and to seriously drop his oxygen saturations. It can cause him to stop tolerating his feeds and therefore restrict his weight gain. He may need reintubating to deal with this. So... after she had got our full attention, she went on to explain what their doing - he's starting Domperidone to speed up his gut, and gaviscon to help reduce the acid. The CPAP should also help and they've reduced his feeds and their frequency.

Back to the tubes and wires
She was also able to reassure us that, despite his very low saturations briefly and his prolonged period at poor sats; this is unlikely to cause additional longterm brain injury.

Yes... we noticed the 'additional' too. She was at pains to point out that Arthur was born very early and had had a very difficult course early on. The good news is that she believes his original head bleed might not have been as bad as we feared (partly because it was so much better now) but she again reminded us that the bleed is still likely to cause problems later and that these would not be apparent yet. "Perhaps just a mild hemiparesis". Sodding hell.

And he's still puffy, and he's not peeing much, and he slept all day but was also really fractious.

A little puffy.
What a day! We're both shattered and rather emotional. Lovely friends are cooking for us tonight and hopefully tomorrow will be better.

Sunset on the unit

Sunset over Chelsea. Hoping for a better day tomorrow.
Best wishes
Si & Amy and pudgy Arthur  x

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