TPN (total parenteral nutrition) is a nutritional formulae of liquid containing vitamins, amino acids, minerals and lipids. It is fed intravenously, fully by-passing the gastrointestinal tract.
Allegra began this form of feeding on 25th February 2012 because she was losing weight. She did not tolerate the nasal gastric feeding (Pepdite MTC or Nutrini). She has been unable to absorb it and has had chronic diarrhoea and this was causing many other issues. Her potassiium levels became very low and she needed iv support. I was hoping my little Allegra would tolerate this feed quicker so we could have our together time at home. With all her other conditions that she is winning against, this showed to be just too much for her little body. We did not have choice in the end, as it was becoming dangerous for Allegra.
It can be detrimental for the liver to be on tpn for a long period of time as the liver has to work quite hard. In order for us to come home Allegra needed to be off tpn feeds.
So they started to increase thenasal gastric feed and this was compromised. Allegra would scream for an hour then vomit. Straight after that she would settle and be her happy gorgeous self with her huge personality. This is so heartbreaking to see as this is meant to be her "good week". The week of neutrophil recovery and the week before we start chemotherapy and cycle 3 is short and very intense.
Because of the time that she wasn't ingesting, her stomach and bowel would not absorb the nutrients. We were getting nowhere fast. Until I took over the increase of feed in Allegra's toleration time and we have gone from 5ml per hour to 16ml per hour. Yay - Mummy and Allegra winning again.
There need to be more tests performed to find out why the uncomfortable pain is persisting. We have come a long way but we are only half way there.
Home is a long way away and Chemo is just around the corner.
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