Friday, January 28, 2011

A very SPECIAL night!

Tonight, 28 Jan 2011 is Sam's first night without TPN! It was decided this week that as he now gets 400 mls of milk in his GJ (gut) and about 800 mls of TPN, they would see how his body copes with a night off of TPN, and increase his milk from 25mls over 17 hours, to 25 mls for 24 hours and redistribute the 7th night of TPN over the other 6. It seems like a really significant moment. They decided to trial it whilst he's in, so his weight and fluids can be closely monitored.....and if he copes with it it will mean that one night a week Sam is free from TPN. That means, one night a week we don't have to access his central line removing risk of infection by 1 day in 7. It means his gut is healthy enough to cope with more milk than we ever dared hope for. It means one night a week if we want to do something as a family we can just do it without carrying a boot full of hospital kit with us and watching the clock.... it means we can go out as a family rather than it being one adult with some kids in one place and the other at home with Sam...... it means Saturday morning we're not having to do hook we are so immensely grateful that he's done so well.

The other news for the week is that if the trial above works out, hopefully we can go home on Sunday on IV antibiotics, but with daily trips to hospital for the next 5 days for his gentimycin hourly infusions. With school starting again it is really important that I'm there to share in the fun and nervousness that a new school year holds for the girls, and Jasmine especially is a bit nervous heading along to a new year/class on crutches.

Tuesday Jasmine also has an appointment here at SS, but in the fracture clinic, where they will take off the cast and see what is underneath. I'm not really looking forward to it, as even if it's a good result and the toe has reattached, I've been warned that it's going to be potentially black and ugly....give me an ilieostomy bag any day!

Wednesday Sam is booked in for his circumcision - it's a GA, but only a day procedure. One blessing is that he doesn't have dirty nappies, so it will be relatively easy to keep clean and dry.

Youth Town is a charity that works with kids and each holidays they run a programme here in Starship for the siblings/kids in SS for a week. This week the girls were so happy to be here, hanging with their brother and joining in the programme down stairs making all sorts of crafts and taking parts in various activities. To have the girls happy and delighted to be here is very wonderful. Yesterday I took the girls to the Auckland Musuem (5 mins walk from hospital and free entry!) and finished the day with Daddy joining us for a picnic..... so although we'd rather Sam wasn't in hospital, we adapt and still there are lovely things in each day...and Sam adores his sisters and comes to life when he sees them.

Developmentally Sam is chatting a lot, now says 'ul lo', 'ta' when you give him something, and 'bye' when you leave. He has also discovered his nose has 2 holes which are great for hanging his fingers in and has a definite look of achievement on when he turns to show you he has found one of his nostrils.....

On that note, I'm off to bed. X


Marybeth said...

That is so great to hear!! I'm so happy to hear that Sam is doing so well with his feeds that he'll be off TPN for a night! I hope eventually he'll be off TPN for good and can get his milk feeds :)

The same hopefully with Miss Janessa<3

I hope your daughter's toe heals up well as well!!

Take Care<3

Samantha Sutherland said...

Fantastic news about the tpn! Yay for Sam's tummy handling the milk so well! You are so right to grasp all the moments you can to have fun and do family things no matter where you are. It is such an up and down life isn't it, you just have to make the most of a not so ideal situation and I always love how positively you approach it too (yes, I can hear you saying that you don't always feel so positive, but believe me, you are doing so so well!) I always love to hear how you are doing with Sammy and what your lovely family is up to. Have a great start to the school year! Sorry I missed you at hospital on Thursday!

Yolanda said...

SOOOOO thankful with you! Praying for the upcoming week and the girls going off to school :)