I have avoided writing this post….

We had a great week in Ireland. Rachel and Jude flew over safe and sound, me and the boys survived the rough Irish Sea. It was great seeing the family again, the boys had a day out in Dublin, the weather was fine and mostly dry and the coffee and tea flowed freely. Never did make it out for any Guinness although we had plans. Oh yes, we had plans.

On Thursday on the train back from Dublin with Jude and the boys he was being fed through his tube and I decided to leave him partially attached with the aim of disconnecting his tube when we got back home. I forgot, tried to lift him out of his pushchair unaware that the tube was caught and as I lifted him from the seat the whole lot was yanked out leaving a hole where the tube should have been.

We have about 20 minutes before the hole closes.

Jude is mildly shocked but not in any apparent discomfort. Daddy is a wreck. Thankfully, Rachel took control partially reinserting it back in and holding it there as I drove back.

We had no like for like replacement so Rachel tries to insert a different type but it won’t work so she improvises with what was the attachment tube (the one that got tangled in the pram), cuts off the end and inserts it all the way in and tapes it off. And we’re off to the local hospital (blue light ambulance and all) where the replacement tube is inserted and all is better in the world again. But our plan for Guinness was out of the window.


This is the type of button Jude did have in, it sits nice and neat on top of his tummy and his feed and medication is inserted through a tube that is inserted into the top. It is the tube that got caught in the pram.


This is what Rachel was trying to insert and what Jude has in at the moment while we wait for a spare button.


And this is similar to the tube my very calm wife used to keep Jude’s hole open until we got to the hospital. If she decides against a career in medicine she can try her hand out at plumbing!

Back home now and the results of Jude’s MRI has been posted to us – no explanation about what it means, just a series of medical terms. Not much fun to read when you don’t really understand it. Thankfully an emergency appointment was arranged to see the consultant. It seems there has been no change from Jude’s last MRI so no deterioration but the ‘damage’ to Jude’s brain is extensive, on both sides and his brain isn’t growing. The prognosis is Jude will be whatever Jude will be. There was also a comment made about his reflux and the risk of reflux triggering a nerve (I think the Vagus nerve after google-ing) which could stop his heart and so it is important to get the reflux under control.

Further google-ing, not my favourite past time at the moment, reveals that while reflux was considered to be a factor in sudden infant death syndrome further research suggest that maybe it is not the case….but reflux can apparently cause  heart palpitations. But having been put out there it isn’t easily taken away.

But Jude is happy at the moment, the boys really enjoyed their holiday and me and Rachel had some much needed down time.


2 thoughts on “I have avoided writing this post….

  1. Rachel … way to go!!When that sucker pops out … oh boy!Very impressed with the quick thinking.

    As for Mr.Jude,he will find his way.He has found his way and he will continue to do so.He is such a fighter and has the most amazing spirit about him.His face,not to mention that rock’n hair,are just precious and fill my heart each time I pop on.

    Love to you all and that sweet,sweet boy.And TRY to limit the googling … no good can come of it … trust me!

  2. Oh sheesh…

    Bravo to Rachel for staying in the moment. I always melt or freeze in the middle of crisis.

    Love to you guys…from us guys!


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