A seven week stint at home, the longest in almost two years has allowed me to sort out an enrolment in school for Ed at Arranounbai Special school with school transport, a 2 week familyholiday in Shoal Bay at the end of September, a weekend of respite in Bear Cottage whilst I headed south across the border to Melbourne, some access to other community service program’s to assist us in caring for Ed at home and begin the enrolment process into University to study Psychology- that’s for me not him.
But like all good things, it came to an end last Thursday with another line infection, this time in both lines and one line has grown two infections. And so after almost 20 months of having a line inserted into his chest, countless admissions to hospital for IV antibiotics due to infection, thousands of temperature checks the last infection has landed us back here at Club WestMed and finally a decision to have it removed which is happening as I type.
The upside is he’ll be able to resume his surfing career or even just begin by being able to access the hydrotherapy pool at his school on a weekly basis with his classmates. The down side is we’re back to needles for his weekly blood tests and canulas in his arm or foot during hospital admissions. Since the line is so septic it’s not possible to remove and replace the line in the same procedure as he needs sometime to clear the infection from his body but we’re going to try and hold off for a while, even try and get through Christmas without anything and then think about either replacing it or inserting a Port under the skin on his chest depending in what procedures and drugs requirements he’ll need in the next little while. It will be great to hopefully enjoy the Christmas break without worrying about infections, temperatures, turning septic quickly although having said that I’m sure our little guy will find some other way to be rare and unique.
It’s planned he’ll be only in a few more days on antibiotics and then home by the end of the week in in time for school and next week’s swimming lessons- that’s my plan, hope it’s his too.
Here are the final pics with his line in.
Sent from my iPad