Thursday, December 17, 2009
A Whole New World
The day before Button's first birthday he had surgery. He had some lymph nodes removed to check for active TB cells in order to confirm his diagnosis. By this time we had been warned that even if he did have TB, it could be a drug-resistant variety, or that it could even be some weird and wonderful tropical disease. We had had him for 3 weeks at this stage, and I had never left his side. We had built up a tenuous (on his part) bond. Mr Taz, Nana and I had been with him through everything , we had declined to use masks and gloves when with him - I was his Mommy not a nurse and I wanted him to know the difference. I felt like I was letting him down when I handed him over to the surgeon, and even though I stayed with him until he was asleep, I have never felt so guilty as I did walking away from the anaesthetic room.
The surgery was uneventful - and Button spent his first birthday hooked up to a morphine drip surrounded by balloons and birthday cards. Everyone made a huge fuss of him, and in it's own peculiar way, it was a really lovely day!
The day after his birthday brought the wonderful (yes, wonderful) news that Alex had good, old-fashioned TB! He could continue his medication and should hopefully make a complete recovery! I could now start thinking about our future as a family.
Another surgery followed to insert a central line so his medicine could be administered more easily. He was on four different types of medicine, one through his "Freddie" daily and the other three orally, at various intervals throughout the day. We decided that rather than me learning how to administer his IV meds, I would take him to the local hospital every day, where they could also keep an eye on his weight. This would go on for at least 6 months.
So our new life began. We got into a routine - every morning I would put numbing cream on the back of his little hands (he needed bloods done regularly to check the levels of medicine in his system - too much could be toxic, too little and his infection wouldn't clear), and we'd head to the hospital about a 30 minute walk away. He'd have his bloods done, his line flushed and medicine given. Then we headed off, to face a day full of charting medicines, trying to get them into him, trying to make sure he kept them down and trying to make sure he ate something. Stressful is not the word for it! He woke every hour during the night, and hardly slept during the day. But he was home, and aside from the exhaustion, it was heaven. He slowly began to put on weight, and his interaction with me improved. I could finally see a light at the end of the tunnel.