Monday, October 21, 2013

Hey there, hospital, it's been a while, so I guess we should visit :(

It never gets easier. I would have just as soon skipped the blog, but realized that if I was crying like a baby at some youtube clips linked on FB, then in the spirit of full disclosure, I should 'fess up.

Spoiler: Bo is doing great and his last day of antibiotics is tomorrow.

But emotionally, we are all a little out of practice, and still a bit on edge.

The school year started without the drama of a line infection, like last year. But unlike last year, hospital policy had changed. So (on the Monday before last) when he started acting a bit grumpier than usual, and complained of pain (which he NEVER does), I immediately assumed the worst. Hooray for catastrophic thinking. Being too casual caused us to miss severe dehydration in 2010 (we thought it was maladjustment to the baby) but not last fall (the new GI thought we were overreacting; it was a line infection- we were clearly correct). So even though his temperature was not very high (it never went above 100'F last fall), I knew it was a very real possibility.

The home health nurse drove in to draw blood cultures, which were run at our local hospital. All the doctors were looped in that night. The next morning (last Tuesday) when he spiked a 102'F temperature, we were off running. The cultures had already started growing, and the machine was awoken. We started packing and a room was prepared while the little one was in her morning preschool. I had to drive into work that afternoon to send a package via FedEx, as well as run a meeting the following morning. JVC spent those 2 days with both kids in-patient. His mom came to provide relief (AMEN). And friends, DVDs (via childlife), art therapy and gifts helped to break up the rest of the week. Bo was home by Friday night, and we started planning for his scheduled clinic visit across the state less than a week later.

The weekend and the early part of the week back from the hospital was an attempt at normalizing, but then we were packed and away from home for another 5 days. And even though the antibiotics schedule was blessedly humane (one dose every 8 hours), all the time away from home was wearing on all of us. This was especially telling when the little one, who only experienced extra treats and company declared on Saturday that she wanted to go home.

The nephrology team is exceptional. However, during a spell this summer, the new senior fellow was left in charge of Bo's case, as the chief was traveling to Asia as a keynote speaker and the pharmacist was on vacation. Typically, they are required to comment on the laboratory testing performed monthly on Bo's blood sample to ensure his medicine is balanced to meet his health needs. When the fellow (presumably overwhelmed and/or shirking) did not call the GI team with comments, I called him myself. It was not a pleasant exchange. I do not tolerate sub-par care for my child. Thankfully, we had an uneventful clinic visit. The chief continues to provide exceptional care. And I'm pretty sure the senior fellow will not soon forget this lesson.

This is the 2nd line infection he's had while at home, ever (aka central line associated blood stream infections CLABSI or catheter-related blood stream infections CRBSI).