Wenesday Update

[The internet just started working again! Below is a post I started in Word while the internet was not working.]

Well, bummer. From what I can tell, the internet is not working here on Isaac’s floor today. I was actually in the process of posting a morning update when a doctor came in to talk with us. When I came back to the computer, no internet. And so I’m posting into a Word Doc that I’ll put online when I get home tonight.

Here’s the bottom line from my perspective, which will only remain relevant for the brief moments I am typing. Everything could change with a visit from a doctor or a nurse or some change in the way Isaac is responding to his treatment.

The bottom line is, Isaac needs to get off oxygen and start breathing slower. The official diagnosis is pneumatitis, which means there’s some inflammation on/in Isaac’s lungs. This could be caused by any number of things; it’s just that the usual causes have all been ruled out. All the cultures are coming back negative, all the tests are coming back negative, his heart looks good, and he’s the cutest baby on the planet in the last 2 yrs and 8 months (since Jenna :-)). These are all good things. BUT, since we don’t know what caused the inflammation, it’s very difficult to tell how long it will take to clear up. Best case scenario, he turns a corner in the next couple of days, he starts breathing slower, he gets off oxygen, and we go home and celebrate. Worst case scenario, Isaac doesn’t improve over the next two weeks, and the doctors are compelled to begin more invasive testing to determine what is going on.

Bottom line restated: We simply do not know. We do have the experience with Joshua and Jenna, and that would lead us to believe that he will turn the corner soon. That being said, neither Janel nor I remember Joshua or Jenna struggling with the breathing rate like Isaac is. We have real moments of fear and anxiety when we let the worst case scenario start playing itself out in our minds. What if he doesn’t get better? Sometimes we just choose not to give that scenario the time of day.

One bit of good news: I blogged last night about the ecstasy of a successful blood draw followed by the agony of the clotting. As it turns out, we sent down three or four different vials, and only one of them clotted. That means the geneticist will be able to do almost all the blood work that was planned. I almost did the happy dance when I heard this today. We really would love to know why our children have all had such similar scenarios.

Other good news: Janel decided to go home for a couple of hours today. She hasn’t seen Joshua and Jenna since Sunday, and it will be good for her to get away from the hospital for a while. I think we’re moving towards establishing hospital life as our new normal. Somehow we just do the best we can for ourselves, our kids, and our responsibilities in life, even when we desperately wish and pray for a different normal.

Speaking of life responsibilities, I don’t know if I’ve ever blogged that this week ‘happens’ to be my reading week at school. That means that I haven’t missed a single class yet. Of course, I’m bracing myself to have to figure out what to do next week, but for now, the timing of all this in conjunction with school work has been favorable. If nothing else, I’m reminded what a luxury it is to have ‘studying’ as a job. It is a privilege, a luxury, and a great responsibility to be in seminary. I hope I can hold onto that perspective as we move through this current struggle.

As I reflect more on the care we’ve received from friends, family, pastors, and community, I’m refreshed by the way I perceive the Holy Spirit to be at work. Lots of ‘text book’ pastoral care stuff hits the fan when you’re in a moment of crisis, and I believe the degree to which it can hit the fan is directly proportional to the relationship that is established between caregiver and care-receiver. When Pookie (my youth sponsor from the eastern shore) was here yesterday, he did and said things that would have utterly appalled any pastoral care professional, and yet what he did was perfect, appropriate, and perfectly appropriate because we know each other well enough to interact at that level. I’m enlivened to remember that the Spirit is not bound by human expertise. I’m enlivened to remember that the Spirit is not bound. Period. Rather, the Spirit seems to be in the business of surprising us with life in places we least expect it. This has been our experience, and it continues to be our desire—that the very Spirit of the Living God would surprise us with life.