Written 5/11/2010, posted today 6/2/2010
Bo's first line lasted 20 months before he outgrew it. He is on his second line: it is now 15 months old. While it has been infusing beautifully, we could not draw blood for labs on Sunday. So the nurse came back Monday morning. Still no draw. So, all day Monday, I coordinated with his GI's office, the infusion company, the nursing company and the hospital that runs the labs to get supplies to get the line to draw and to get labs run. We instilled TPA (aka CathFlow, Genentech's Altapase) for 30 minutes. Nothing. We waited another hour and a half. Blood! I spent the day on pins and needles and when it finally drew at 8pm, we were all so relieved. It's not like Bo wasn't in the hospital for his first 7 weeks of life, and we were told he wouldn't live, and that he needed a very risky transplant that would itself kill him, and that we should consider hospice if we refused transplant. It's not like we had an easy time setting up diaper service, a nursery and layette supplies, wondering how long we would need them. It's not like I didn't have a convertible car seat that made me cry every time I looked at it, wondering if we needed it at all. Or that every time he refluxes my hair doesn't stand on end, leaving me to wonder if we will be getting admitted back to the hospital. It's just that yesterday was a brutal reminder of all those things at once. Without being able to draw labs might mean the need to replace the line, or a line infection, or no new TPN or using the last week's TPN formula (best case scenario). But we got lucky. The doc had no problem calling in the order, the infusion company reassured me that they sent this out to homes all the time, the nursing company was comfortable having our nurse instill the enzyme, and my brave husband did the final aspiration and blood draw. Besides working the phones, all I did was try to keep the toddler from bouncing up an down to the Wiggles. That's all, good night.
Rinse lather repeat while they were at DeVos for an infusion just a week later. Thankfully, the next scheduled lab draw was a total non-event. And Bo will turn THREE tomorrow. I cried in the car all the way to work this morning. None of his diagnosing physicians expected him to make it to this day. I wonder if this is what other parents feel when their troublesome teens finally walk across the stage and grab the diploma? High school, college, grad school, wedding, grand children. Those will all be a non-event compared to today.
