Ben on parenteral nutrition and where do we go from here

It's been a long time since I blogged and a hell of a lot has happened.  Ben went into Great Ormond Street hospital in november for a trial of modular feeding.  To cut a very long story short it was a complete failure.  We were discharged on the friday and by the monday he was in such a bad state, hysterical with pain that we were admitted to our local hospital for 2 weeks for gut rest and to try and restart feeding him.

We had an emergency appointment at GOSH on the 23rd of Decemeber where we reluctantly agreed that the only course of action was for Ben to go on parenteral nutrition (fed into a major vein bypassing the gut). His pain and weight loss had got to a point where we had no option. We were warned it wouldn't be til late january and we'd be in for 6 weeks!

Christmas was horrendous and by new year we were begging GOSH to find him a bed anywhere in the country to start the parenteral nutrition (PN) whilst waiting for a bed at GOSH to do the home training.  They took pity on us and Ben was admitted on the 4th of january.

He had a Hickman line to deliver his feed placed on the 5th Jan and they also redid his pegj as it had misplaced and he started on the PN.  They decided to do endoscopies to try and work out what was going on and found he had eosinophilic infiltration still despite all his meds and something we'd never heard of called pneumatosis intestinalis.  This is where the lining of the bowel has air filled cysts. It is a rare finding and not normally associated with his existing diagnosis. It certainly explained why he'd been in so much pain and justified the major decision to go on PN.  As a result he is not only on PN but also completely nil by mouth apart from his meds.  This will be the case until he has scopes again in June when they will decide whether or not we can attempt to feed him again.

Various tests where done, many of which remain outstanding, as they now think all his problems are related to a connective tissue/collagen disease and there is a major autoimmune component to his condition.  His hypermobiloity is very bad. They also found before we left that he has more immunodeficiency than previously.

So after 6 weeks we came home and are adapting to life on PN.  The training was intense but it needs to be as the end of the Hickman line sits inside his heart so the pressure to not make mistakes is immense.  The procedure takes 45 minutes each end of the day and he is on the feed for 13.5 hours.  Add in the taking it out of the fridge at the right time and it pretty much rules our lives. 

The severe pain has gone but he also has bacterial overgrowth in his small intestine so is on cipro to try and improve this which gives him pain and watery diarrhoea.  He has yet to put any signinficant weight on but they are putting this down to his low urine sodium levels which we are correcting with supplements.

It is hard as we don't know anyone else on home PN but that will change when a dear friend of mine does the training.  It is very isolating as noone can fully understand what it means.  It was hard enough when he was J fed but this is a different ball game.  My other concern is where on earth do we go from here and what does the future hold for him???  They noted during his scopes that his colon was very dismotile.  If his problems are collagen related then there isn't a quick fix.  The gut rest will help the pneumatosis and the eosinophils but I don't see how it will change the structure/function of his gut.

He is such a brave little boy and i am so proud of him and how well he copes and adapts to it all but it breaks my heart when he asks what will happen when he is older and maybe he can eat again when he's bigger.  A 3 year old shouldn't have to talk like that.  He has a great sense of humour and a love of life when he is feeling ok.  A source of inspiration to us all.

So we have questions than answers and continuous worry.  We go back to GOSH in a few weeks time.  We will see if we find out anymore.

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