Friday, December 31, 2004

Barring some unforeseen event in the next couple of hours, Will is going to enter 2005 in better condition than we would have expected this morning. After doing well yesterday and into the evening, he needed to be tapped at 2 a.m. That helped for a bit, but by the time we came in to see him late this morning, he was needing a lot of oxygen and not really responding to much. Around 6 p.m. they tapped him again, and the results were dramatic and immediate. Now, he is needing only about 40 percent oxygen (as opposed to 80-100 much of the morning and early afternoon). Suffice to say, the octreotide, contrary to early hopes, hasn't kicked in yet. They've increased the dosage a couple of times, and we're hoping that it will start doing what it is supposed to do. It is clear that when he doesn't have that fluid around the lung, he does really well.

Over the weekend, we'll probably spend a considerable amount of time with Will at the hospital. So, posts might be infrequent. I know that people get concerned when they don't see something for a long while, but this time it will just mean that we're taking advantage of the weekend to be with Will.

Some people have asked how Mary and I are doing through this. We're getting by. Monday morning was as scary as anything either of us has experienced, and our time with Will since then has been difficult because each fluctuation in his condition might indicate another episode like that. I woke up in a panic earlier this week because our furnace was making a noise that, in my subconscious, sounded like Will's ventilator and I was worried that it wasn't working right. Alarm clocks sound like phones and have us both sitting bolt upright in bed worried about what bad news might be coming. Those feelings, while always there, aren't always that close to the surface. This week, however, they have been. Today was tough, because nothing seemed to work. When he is doing well, we're doing well; when he hurts, we hurt, and the frustration is crippling at times because there is little we can do to help him. So, if we don't respond to e-mails or calls, just know that they really do help, but we can't always find the words to sum up how we're feeling or to even adequately respond.

Now, let's get 2004 -- and all of the hurdles and challenges that it brought -- behind us. It brought the most wonderful gift into our lives, but it's time to move on. 2005 is going to be Will's year.


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