An Important Date in the Calender

After 4 nights in a row at the hospital it feels strange to be home and without my boy in the same room with me. When Shirley and I were alternating nights up at the hospital, Samuel always managed to choose the nights I was in the room to cry his way through the night, so I was unsure what state I'd be in after 4 nights with him. But I'm pleased to report that he went easy on his old man and slept solidly, with the exception of the odd grizzle around 4am. There's a curtain between the bed and Samuel, which is pulled across when I'm asleep, as the nurses have to come in during the night for their hourly pump checks and bag changes. Fortunately, they use a torch so as not to wake the parent and as Samuel's room is opposite the nursing station, usually they'll hear Samuel if he's crying or his oxygen levels are dropping and come in to settle him before I am conscious enough to figure out what's going on.

Today we had our second training on TPN (feeding Samuel intravenously), which focused on what precautions we need to take when taking Samuel off TPN for 3 hours break (hooking off) and then setting up Samuel's new bag of 'food' every evening (hooking on), in order to prevent infection through the lines that are inserted into Samuel's bloodstream to deliver the nutritional fluids. However, as I will be heading back to Laos in 2 weeks time, Shirley will be trained on how to set up his TPN while I'm away, and then my training will start when I return from Laos, and once I am as proficient as Shirley will be by then, we'll be able to take him home! Our trainer has put a tentative date in the calendar of October 19 as a target date to work towards Samuel's discharge - it's quite incredible to think that we could all be home together in one month's time! However, as our trainer explained, Samuel is likely to be a 'Frequent Flier' when it comes to visits back to Starship, given the many holes in his body and the added risk of infection. But we're still very encouraged to have a date to work towards, even though there's a lot still for us to learn and considerable set-up to be done at home to get his room equipped with oxygen compressor, trays full of syringes, gauzes, lines, connections, saline etc., a metal trolley, stand for the TPN, fridge....

We had a small step forward today when the radiologist was able to insert the GJ tube through Samuel's gastric hole in his tummy and down into his small bowel. You may recall that the first attempt last week was unsuccessful as the pipe was too wide to bend around the abnormally sharp turns in Samuel's intestine. So we were pleased that the new technique worked in getting the pipe in the right position to bypass the stomach and give feeds directly into the small bowel in the hope it will be able to aborb some nutrients and reduce his dependency on TPN. Unfortunately the only tube they could use didn't have any means to secure it from coming out so the Radiologist isn't sure how long it will last as the only thing preventing it from pulling out is some tape across the tube on his tummy. This time Samuel was a lot more upset by the procedure and cried non-stop for the whole hour, obviously in discomfort from the poking and prodding of the line as it went through his stomach and into his small bowel. That was early afternoon and by the time I left early this evening he was beginning to show a temperature, his heart rate was elevated, he was breathing faster, and he looked more listless then normal. We're hoping it isn't another infection, but his vesicostomy site has some pus coming out from it so that may well be the cause, or it could just be a reaction to the procedure this afternoon. They're keeping a close eye on him and will start him on antibiotics again in the next few days if his condition deterioriates, but we'd appreciate your prayers for protection against further infection.

Being based up at the hospital, I was able to get a lot of work done on my final Masters project this week, so I don't feel guilty putting the laptop away for the weekend and taking my girls skiing for the weekend. We leave tomorrow lunchtime (taking the girls out of school early) and will be spending the weekend with a South African family we've got to know through school whose daughter is in the same class as Jasmine. For me, teaching my girls to ski is a dream come true ever since Shirley and I spent 4 full seasons skiing in Europe when we were in our mid-20s. However, the actual experience may differ somewhat to the idealistic picture that I've carried in my mind, especially if the snow is mushy after the warm weather and the girls are more interested in snowball fights and hot chocolate in the lodge. But it will still be fun to have our first trip out of Auckland since Easter when we were down in Rotorua, and there's always the geothermal hot pools in town and log fire in our friend's holiday home if we get too cold and wet.

We'll be back on the blog early next week with photos of beautiful blue skies and pristine powdery snow.....

Francis