Home At Last

Here it is 10:30 on Saturday night and we are in fact at home.

Somehow, this didn't work out as straight-forwardly as I had expected. Earlier in the week, in response to one of my posts, our friend John remarked at how difficult it can be for doctors to see the patient in his entire context, rather than as a technical problem to be solved or case to be managed. John works in healthcare and has spent 25 years dealing with doctors, and has a lot of experience around the healthcare system in various capacities.

His comment got me thinking about all the difficulties we had with Zac's IV, and by Saturday afternoon I had decided that if there was a problem with the IV, we could be done with it. It was that realization that Zac was the patient and he (and we, as his parents) had the last word on his care. Not to be stupid of cavalier about it, but to bring our best judgement to bear with the information we got from the doctors and make what we felt would be the best decision for him. If we were trying to strengthen his immune system, and his white count was normal, he'd be much better off at home where he'd be happy (and stronger in that way in which the mind and the immune system interact) than he would be at the hospital.

I hadn't quite made it through that logic chain to the point where I realized that he could come home Saturday night until our friend John arrived. When he saw Zac (and as I've said, he has a lot of experience with people in hospitals), his reaction was, "What are you still doing here?" Reenforced by the night-shift nurse's reaction of "What are you still doing here?"

Zac was a willing co-conspiritor, and while I was out at the first at of a local theatre production (which I left when I realized it was stupid to be there when Margy and Zac and John were being social in the hospital - the I'd gotten the ticket earlier...), and while Margy was out getting Indian food, John and the nurse and Zac got together and planned. The nurse called the doctor (not the one who we'd seen most of the week, but his partner, who was on this weekend), and long-story slightly shorter, she arranged for the discharge.

Margy, Zac, John, and I arrived home fairly short order at about 10:30PM. Zac dozed on the couch while the three of us chatted for quite a while. It was very pleasant all being home.

I wondered why it took an external catalyst to make this change happen, and realized that the dynamic between patients, parent, and doctor is really not designed for proactive participation by the parents, at least in this kind of emergency situation. Perhaps we should of second-guessed the surgeon when Zac was in extremis on Friday, but I think not. It was more like, "Our son is really sick, you know how to fix this, do what you need to do."

On the other hand, by late in the week, we needed a lot of information to be able to make an informed decision about how long Zac should have remained in the hospital, and we weren't asking for that. And finally we needed the perspective and gumption to say, "This is the wrong plan for us. If you need a blood sample every day, we can bring him in. What should we be watching for? Why not do oral antibiotics at home? He needs to be home."

It was hard to transition from one mode to the other. So John was our catalyst to do that, and we thank him for it. (Plus for being such fun to be around, and a generous guy to boot!)

So I don't know if there's a wider lesson in that or not, but I put the experience out there for you all to contemplate. We're just happy to be home!