The Best Laid Plans

My blogging friend Lisa recently wrote about rolling with the punches. Her lesson couldn't have been more timely.

You see, Lisa and her daughter Elisabeth were supposed to travel to Duke this week for a stem cell infusion, the same treatment that Claire is getting. Wanting to meet Lisa and Elisabeth, I deliberately scheduled Claire's second infusion for the day that they would be there. Another friend of mine, Lindsey, also scheduled an infusion for her daughter for that day. It was to be a reunion of sorts. Except that things didn't go quite as planned.

First, Elisabeth came down with the flu, so Lisa had to cancel her trip.

Then, on our way to Duke, Claire started having seizures. She had approximately 6-7 the day before her infusion, and another 3 the morning of her infusion. Since we were already in Durham, we headed to the hospital not knowing whether Claire would be able to get the infusion.

And then, a funny thing happened . . .

As we were parking, we ran into Hope Smith, the Perinatal Clinical Nurse Specialist who helped us coordinate our delivery at Duke. Hope is an amazing person with the uncanny ability to be in the right place at the right time, but more about that in a future blog post.

Hope asked about Claire, and we told her about the seizures. The next thing we knew, Hope had scheduled us as an "add-on" with the pediatric neurologist who saw Claire in the NICU, who just so happened to be "in clinic" (i.e., seeing patients) that day. We think the world of this neurologist and knew that he would take good care of Claire.

The neurologist did a thorough exam of Claire and spent considerable time talking to us about her seizures. He also answered a lot of the questions that had been brewing in our minds since Sunday, when Claire's seizures reappeared. He then conferred with Claire's neurosurgeon, who thought it would be prudent to rule out a shunt failure, given the rapid increase in the number of Claire's seizures.

Rather quickly, we were whisked to the ER so that Claire could have a shunt series done. As it turns out, Claire's favorite NICU resident, Dr. Dave, was on rotation in the Pediatric ER, and Claire just so happened to be assigned to his team. Incredibly, this was a complete coincedence; Dave had no idea we were at Duke, and we had no idea that Dave was on rotation in the ER. After Dave's shift ended, he was replaced by Dr. Joel, another one of Claire's favorite NICU residents. Like Dave, Joel just so happened to be on rotation in the ER and just so happened to be assigned to take over Dave's patients for the day.

Claire's shunt series came back normal, meaning that her seizures were caused by a neurological problem, rather than a shunt problem. As a result, Claire was started on a new anti-epileptic drug, Trileptal, and we were admitted to the hospital for overnight observation. The night went well - Claire only had two seizures after starting the new drug.

The next day, she received her stem cell infusion, which also went smoothly.

Looking at these events, I could easily be upset. Upset that things didn't go as planned, upset that Claire has been having more seizures, upset that Claire had to have a CT scan and an X-Ray, upset that I had to spend a night sleeping in a blue recliner, upset that I missed my friends Lisa and Lindsey. But my friend Lisa has taught me something about keeping things in perspective, and I can see that a lot of good came from the last few days' events:

• We were able to get in front of Claire's Duke neurologist, whom we trust profoundly.
• We got an answer once and for all about Claire's shunt, and we feel much better knowing that our Duke doctors devoted their attention to the issue. (Previously, we felt that our Atlanta neurosurgeon had quickly dismissed concerns about Claire's shunt before even examining her.)
• We got to see a number of doctors and nurses who took care of Claire while she was in the NICU who we otherwise would not have seen. Having developed a relationship with them, we were able to ask them countless questions about Claire's condition and get some answers.
• Claire is receiving a new anti-seizure medication, which (so far) seems to be working to prevent her seizures.

Although things didn't go as planned, it seems that God works in mysterious ways. He put many people in the right place at the right time with the result that we were able to get some help to better manage Claire's seizures. We hope and pray that the new seizure medication works and that Claire's seizures stop once and for all. Even if they don't, we'll have to "roll with the punches," knowing, of course, that God's got our back.