As you can see, we made it to the snow and as promised here are the photos of clear blue skies, although the snow was not quite the powdery stuff I had hoped for due to a lack of fresh snow for weeks now. But it didn't make any difference to the girls who still got to make their snowman with their friends Mila and Maya as well as learn to ski well enough in 2 days to ski down the beginner slopes and back up the T-Bar lift without any help from me. I was sorry that Shirley wasn't there to see our girls skiing for the first time, but I got lots of video so at least she could see how quickly they picked it up. It wasn't until I was going up the chairlift with the girls and swimming with them in the hot thermal pools in the evening that it hit me how claustrophobic life has become for us. For the past 3 months, our lives have mostly been spent within 10 square km's of Auckland hospital and we can count on one hand the number of times that the four of us have had the opportunity to spend time with friends outside the hospital. So I found it incredibly liberating just to get in the car and drive south for 4 hours on a road that was different to the 15 minute route between the house where we're staying and the hospital. And it was great for the girls to do something new and exciting rather than the regular Friday night TV dinner in Samuel's room.
Meanwhile, Shirley and Samuel were having a quiet weekend together up at the hospital, Samuel was settled which meant Shirley got some good night's sleeps and was able to focus on caring for Samuel and observing the nursing staff set up his TPN. Results came back from a swab of Samuel's vesicostomy that he has a bacterial infection, the same one he had while in Intensive Care called pseudomonas. Even though they knew he had an infection early this week, they didn't give him antibiotics straight away as he wasn't 'febrile' (showing a fever), however last night when I was staying up with him was when his temperature went up, heart rate and respiratory rate increased and he cried on and off through the night. So he's been started on antibiotics now which is targeting this specific bacteria. The other news this week is that his small intestine seems to be coping with the minimal forumla feeds that he's been getting direct into his intestine via the GJ tube that was successfully inserted last week. So today the amount was increased by 100% from 1ml per hour to 2mls per hour! That may not sound much (as it isn't) but it's a positive sign that his intestine may be capable of absorbing some nutrition which would reduce his dependency on TPN. The important thing is that the milk formula isn't being aspirated back out of his stomach which suggests that it isn't refluxing back into the stomach but hopefully is going the other direction and resulting in thicker and larger amounts of fluid in his ileostomy bag. I hope Shirley gets a better night's sleep tonight than I did last night, my turn is coming again tomorrow night, which is a good reason to sign off and make the most of my chance for uninterrupted sleep tonight.
Here's a video clip of Samuel charming his nurse