Patrick's symptoms have presented a bit of a mystery to the doctors - the conditions that they are considering don't have a single diagnostic test. For example, if you have a sore throat, the docs administer a strep test and you know for sure whether or not you've got it. In order to diagnose these conditions, it's more like a chinese menu. For example, if someone has 10 out of 12 of the symptoms on the list, then it's likely xyz disease. Patrick has a number of symptoms/markers for one particular condition, but he doesn't have one of the ones that the doctors almost always see. They held off treating for that condition because of that missing factor, and continued more tests to uncover the underlying problem.
We won't have all of the results of yesterday's testing until Monday or Tuesday, so the doctors decided to go ahead and start treatment for the condition I mentioned above. Patrick received the treatment via IV overnight, so today we will see if he has any improvement. Please cross your fingers!
Another balancing act we've been working on over the past eight days is how to take care of Patrick, each other, and ourselves. At the beginning, our pace was a sprint - each of us spending as much time as possible in the room with Patrick, with one of us leaving late at night to go home, sleep and get back by 7:30 the next morning and then staying all day. That pace is only sustainable for a few days, and as this began to stretch out, we realized that we needed to slow down a bit. For now, our schedule is that one person spends the night with Patrick, then goes home in the morning for a few hours to unwind and rest. That person heads back to the hospital after lunch then stays till P is tucked in at night and heads home to sleep. This way, we each have a 24 hour shift at the hospital, then an easier day of about 8 hours. It's more of a run/walk than the dead sprint we were running earlier. While not ideal, it at least gives us a little time to ourselves to recharge our batteries.
You're probably waiting on news of the little guy. Sorry for making you read through all of that first! Patrick got a good night's sleep last night. His nurse was in every 15 minutes all night monitoring him during his treatment. (This meant that Mom did not sleep so soundly!) He woke up hungry and demanding American cheese. He's moving around and talking more - both of which make Andy and I very happy. Since he's had so many test and blood draws, Patrick has decided that he no longer trusts anyone who is wearing scrubs or rubber gloves. This makes for a squirmy, wailing baby every time someone comes in to take his temp, give him medicine, or (unfortunately) draw blood. I may be naively optimistic, but I'm taking the fact that he has the energy to protest so loudly as a good sign that he's feeling better. We still have a very sick little boy, but I'm choosing to focus on the good things for now.
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