Ignorance is not always bliss

For the last few weeks we have had an ongoing problem with infection in Jude's stoma. She has also had increasing levels of discomfort & distention in her abdomen, with no relief forthcoming from any quarter. This came to a head with two ambulance trips to our local hospital & eventually a transfer to Waikato Hospital in Hamilton. Yesterday she finally got her colonoscopy & a new PEG fitted. The old one had degraded quite badly, & this tallied with my theory of it being cause for concern. The big relief was, however, that there was no sign of an ulcer which was what they were worried about.

I should explain that Jude's PEG was fitted very early in her illness on the advice of a remarkable proactive Neuro nurse. She didn't actually need it to live when it was fitted. All we needed to do was keep it flushed with water. As her needs changed, so did the use of her PEG & we just worked it out ourselves, as it never occurred to us to seek advice. So, we just didn't realise that we had been putting far too much into her poor old tum at a time, like 3 bottles of fortisip & 200 mls. of water at a feed. Apparently, one bottle at a time is quite enough with 50 mls of water each side.

So, I'm due to go over & collect her today. Hopefully, her pain levels have dropped substantially & hopefully, they will transfer her by ambulance. This will give a far more comfortable trip than poor old Sherman can provide. When she gets here we go onto a routine of 6 feeds a day for her. We will probably work those around her sleep periods. It will probably take a bit of adjusting to, but I'm sure we will cope. Will let you all know how it goes anyway....