We're Still Here

I’ve been trying to hold off on writing an update until we were able to speak with the doctor in Dallas, but I think that I might forget everything that is going on right now if I don’t write one. We’re expecting to hear from Dr. Fearon tonight and get the surgery plan laid out for Carson for the upcoming year. I’m very optimistic about our phone call and can’t wait to be talking to someone who doesn’t need to be educated by me about Apert Syndrome. Heather was talking to me last night about how we are always having to educate the doctors and nurses who work with Carson about his syndrome. I guess it comes with the territory and we’re going to need to get used to that as time goes on.

We did send Dr. Fearon the pictures of Carson’s head, hands, and feet. Here’s what he had to say, “Although looking at pictures is not the same as performing a physical examination, it is my impression that Carson appears to have a more favorable skull configuration, and also has a Type I hand. Both are good.” So we are very happy about that. It’s nice to have some good news in the midst of all of this craziness.

The occupational therapist came by yesterday and spoke with Heather about Carson’s progress on bottle feeding. It’s not going as well as we hoped. She said that with the combination of the anomalies in his mouth (i.e. cleft palette, tongue set back farther in the mouth) that he is not being able to coordinate enough to bottle feed. She said that the pediatric surgeons are going to come by on the 18th to review Carson’s healing progress and determine when they can put in the G-tube. We’re expecting it would be around three weeks from today. Everyone that we’ve spoken too said that the tube isn’t as bad as what we think. It’s one more tube, but if it means we can take him home sooner, then that’s not a bad thing.

Carson’s been alternating from the ventilator to the trach mask. They have tried him off the vent completely, but his lungs still aren’t inflating deep enough. So they have been alternating him with his mask just to help him develop the strength to breathe deeper. We think that he’ll grow strong enough to do this soon.

We’ve been exploring options for getting ourselves to Texas since it looks like we’ll be going there within the next six months. We were told by our insurance that they don’t cover the cost for transportation for medical care (it was worth a try). They also told us that if Carson requires oxygen, that he probably won’t be able to fly commercially. We weren’t expecting that. So we’re hoping that he’ll be off oxygen before we fly or that we can find a way to drive down to Texas. I suppose that tonight’s phone call from Dr. Fearon will answer part of that question.

Carson’s been able to wear some clothes now. It’s kind of nice to see him dressed and not naked. Heather has some good pictures of him that I was going to include with the post, but everyone will have to wait to see those (I’m at work writing this). That’s all I have for now. I’m sure I’ve forgotten a bunch of things that have happened, but I’ll include those with the next post. I should have spoken with Dr. Fearon by that time so there will be lots to share.