T.P.N. stands for Total Parenteral Nutrition, BUT this is kind of false information, as in Samuel's case he also receives a little nutrition via the milk to his GJ tube..... so a more accurate name for it is now I.P.N (Individual Parenteral Nutrition) although some of the medical team just refer to it as 'I.N.' as in Individualised Nutrition... So having been confused more than once as acronyms are flying around the room, I'm now sticking with T.P.N. for info sake as that's the name the pharmaceutical company call it. Our girls call it 'Wiggle Juice' which is the name they've adopted from Aria (check out http://aria.org.nz/) which is possibly a more accurate term!
Today I continued with my hands on training of hooking Samuel up to his TPN. With neither of us having prior medical training we need to get proficient with the sterile technique so that we are so familiar doing it without thinking, so we can cope with Sam when he gets home. Today we met with the gastro nurse specialist and the Bio-Med CEO - the company that will make and provide TPN directly to our home which is requested on prescriptions/blood results monitored by Starship.
Francis will focus on being trained this week (I had the days he was away), Bio-Med are ordering our various supplies (fridge for TPN storage only, pump, pole, trolley etc...) to be delivered over the next 10 days. After checking various people's diaries, we are now aiming for a more realistic date of around Oct 27 to get Samuel home. This will also give us time to sort out our home to be able to fit in all that is needed.
Today Sam was generally happy although was vomiting a lot - his milk feeds were stopped for 4 hours this afternoon to see if that would help - it seemed to. He is looking less yellow, and we're hopeful his weekly bloods that are done on Wednesdays might show his biliruben going down (liver function test). He is very chatty and animated and lots of smiles when he is awake. An oximetry test was done on Samuel over 24 hours and his oxygen requirements are variable - so he now has O2 wafting near his face as he sleeps whether day or night. He doesn't need it all the time, but clearly does need it at other times so this will be a challenge for us when he is at home.... so we need to pin down some more details of how to care for him at home with the respiratory team.
Aunty Sarah & Nana were stars over the weekend! Sarah roomed with Sam on Friday night and Anne stayed Sat & Sun, so it gave us a whole weekend at home with the girls, a chance for all to catch up on sleep and a day to move furniture around the house, sort out trip washing, put in some better storage and bake biscuits with Candace! It really did help to anchor the girls to their new 'home' and they were relaxed and happy as they skipped off to school today.
Tonight Samuel has his Daddy bunking in with him again and I'm home with the girls who have done very well to get through their first day of school being rather jetlagged. We're hoping they'll sleep through tonight and not be wandering in between 1 & 3 am like last night!
Tomorrow at 9am Francis & I will both meet with Karyn (nurse specialist) to continue our TPN training. This week will be full with training in the day and then TPN hook on around 6pm each night.
Thanks again for your ongoing love and care and prayers for Samuel. X Shirley