Thursday morning, everything looked fine. The site where Bo's line exits his body is something that is visually inspected daily. It looked fine that morning. I had noticed that it was pinker than I like it when we were inpatient at DeVos after we did a dressing change there the Saturday before last, but it looked fine as late as Thursday morning. By the afternoon it was weeping. I started panicking.
My mind was racing: what if it's a line infection? what if he is septic? what if this blows up so fast we can't catch it? how do you raise a child in the shadow of her sibling's early death? I couldn't stop. We did a dressing change and Bo was crying that "it huwt." I nearly cried myself. I was so freaked out I forgot half the things we needed for this sterile procedure. Thankfully Bo's dad was fully functional. We decided to look again the next day, do another dressing change if needed and possibly go to the hospital. We monitored his temperature every half hour till he went to bed and once when we changed his Omegaven bottle around midnight. It went up to 99'F and came down to 98. All Friday morning it was 97 and some change. We called the surgeon who ordered cultures from the drainage and from his blood, as well as antibiotics (abx) to start that evening.
We were happy to treat from home. Bo had other plans. Saturday after his second dose of abx, his line stopped. It had been difficult to draw blood from for cultures over the last 2 months, which was why we had Altapase (TPA) in the house, but it had infused beautifully until that morning. Then nothing. Pffft. Hard as rock. Again. My brain stopped. We packed up the car, the baby, the kid and a few bags of stuff. As we're headed to the hospital my husband asks if I've called the surgeon so we can go straight to the floor. DUH. No, I didn't, but I would have had my brain been working. So we did, and he did, and we got there in time to watch some movies from Child Life's library, and take a nap.
The transport nurse used the hospital protocol for TPA and worked on his line for 5 hours. A little bit of junk came out of the line, but the clot didn't soften much. So the surgeon put Bo on the schedule for Sunday morning. With a slim wire not too stiff that it would puncture the line, and not so floppy that it would not penetrate the clot, the doc threaded the wire through the line and back and was able to get the line drawing and infusing in 23 seconds. Surgery averted; a simple plumbing job saved the line. We were discharged within 24 hours of admission.
AND yesterday, Monday, his cultures remained negative for bacteria, so the abx have been discontinued. PTL! Ahn was very cooperative throughout, and since the hospital is 2 miles away, I went home with her and slept, fitfully. God is good, all the time. All the time, God is good.
