2009 Version II

It could never last, a whole 6 days of 2009 passed before Jude was admitted into hospital – at least it was something different this time, bronchiolitis caused by the Human respiratory syncytial virus

I was working down in London Monday and Tuesday and when the various professions descended on Jude for their first 2009 visit on Monday Rachel knew they were concerned – it was probably that concerned look they had on their faces. Anyhow, when they came back the following morning they were still concerned and Jude was admitted back onto the ward. His oxygen levels were low, his skin mottled and his breathing laboured.

Still, 24 hours and a bit later and he’s out albeit on a new drugs regime. He now has an inhaler to assist his breathing and a new drug for his myoclonic jerks as the first one didn’t work.

So, in now particular order Jude’s drugs

The inhaler.

Epilim (Sodium Valporate) – the anti epilepsy drug that we will wean him off over the next few weeks.

Nitrazepam – the new anti-epilepsy drug that we will wean him onto over the next few weeks.

Domperidone – to stop his food coming back from where it came (made a massive difference when it was increased in the Autumn).

Diazepam – prescribed when Jude was real bad last Summer and now being reduced towards withdrawal.

Bacolfen – used to suppress the symptoms of Cerebral Palsy.

Some antibiotic – he has various ones every now and then, usually for chest infections.

Omeprazole – to reduce the acid in his tummy.

Senna – to make what goes in his mouth come out a little easier at the other end.

He also has a patch to dry up his saliva a bit to stop him dribbling too much but we came off that as it dried up other secretions too and he needs to cough them up.

10 drugs, 14 months old. He will have 8 of them in the morning – it’s almost a meal in itself.

Today is one year since my dad passed away. I was meant to be in Ireland to ‘see him’ but I couldn’t make it. Dad, if you’re reading this – I’ll be over sometime….promise.

Jude's Grandad John

Jude's Grandad John

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5 thoughts on “2009 Version II

  1. Hi guys, have been keeping up with the blog as has Becky and we both said how much we had enjoyed reading so many positive things recently and we were delighted Christmas was so lovely for all the family and that Jude was 100% present in everything. Just as you dare to hope eh?

    Poor little man, so many drugs. With all those chemicals in his system he may be suffering with sore and achy muscles as it is in the soft tissues where drug deposits tend to settle, so some gentle massage to his limbs (if he can tolerate it) would be beneficial to try and release the toxins into his lymph. No more than 10 mins each time though as you dont want to overload his lymph system too much.

    Ian, very special pic of you with your Dad.

    Hope it is a happier new year 2009 for the Marrey family. Take care, Debbie and Becks

    high five from Jack!

  2. If dad was anywhere yesterday Ian, I’d say it was standing by your side while you stood by Jude’s side.. like father like son… love you xx

  3. Still here.Never very far.Just fighting the good fight.Exhausting …. don’t you think?Have loved all the pictures and updates.Near and dear to my heart you still are.Forgive our lack of posting.You know ….. chaos here but finding her way once again.When do you think enough will be enough for these kids?Till next time,Heather

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