With two sleepless nights back in hospital just prior to Christmas (see earlier blog), and then the rush to get presents bought, wrapped and food prepared for Christmas day, Shirley's body decided it had had enough and reacted as it normally does when she's exhausted - Strep throat! So she's been in bed since Boxing Day with fever, agonizingly sore throat, vomiting, headache and inability to do much else but sleep. By the time we realized what it was, all the doctors' surgeries and most pharmacies were closed for the holidays, so we called our good friends up in Samuel's Ward 26b who were happy to help out with a prescription and enough antibiotics to get Shirley through the two-day public holiday. They understand that it is in Samuel's best interests that Shirley recovers from this illness as quickly as possible so a) she doesn't pass it on to Samuel, and b) she can get well enough to share the load in caring for him, as it's a lot for one of us to keep up with all his needs for an extended period. Fortunately my family have come to the rescue and the girls have gone to stay at my sister Sarah's place for the last few days while Mum has stayed here with me and taken over the household chores so I can focus on caring for Samuel and Shirley ( I'm still getting used to having family so near that we can call on them at times like this when we need help, it would be tough living anywhere else right now). We'd value your prayers for her, it's really knocked her this time and she isn't responding to the antibiotics as quick as she usually does.
I had a scare today about half an hour before I disconnected Samuel from his TPN, I noticed blood running back inside the line the opposite direction to the flow of TPN. That's never happened before and either means the pump isn't working properly or the positive pressure connector that should prevent any backflow is faulty. I got on the phone to Biomed who are contracted to provide all our TPN needs, and we figured out that it's probably not the pump, so it's probably the connector which get's changed every time we hook up the new bag of TPN. If any other TPN families out there have experienced this before, I'd appreciate your advice as it seems to be a bit of a mystery to Biomed and our TPN specialists at the hospital. Hopefully all will go well when I hook him back up to his new bag in an hour, and it was just that 1 faulty connector in 10,000 that slipped through quality control.
We didn't send out a Christmas newsletter this year, as we figured there's not much more to say then what's already been said in the 100 or so blogs over the past 6 months. If you read this blog on a regular basis then you probably know more about what's been going on in our lives this year than you know about most of your other friends. You'll also know that 6 months ago it seemed almost too much to hope for that Samuel would still be with us this Christmas, let alone living at home. That is the greatest present we could have hoped for this Christmas and we're so grateful to you all for sharing from near and far in both our joys and our sorrows during 2009.
Here's a special New Year's message to you all from Samuel. Happy New Year and we look forward to bringing you news of Samuel's progress in 2010.