Inching toward some answers

The long-awaited, highly anticipated consultation with the surgeon was today. Angy and I thought we'd be there about an hour and come away knowing what type of surgery Jackson will have and exactly when in the next week or two it would be. We were incorrect. After being in five rooms and speaking with about seven medical professionals, we came away knowing that we won't know about the type of surgery for a few more days yet and that it won't take place until early January.

Although Dr. Jeffries (cardiologist) had stressed urgency, Dr. Fraser (surgeon) stressed taking time to be sure that Jackson's "very tricky" case is handled the best way. Angy and I are thinking they've had plenty of time to figure it out, but Dr. Fraser wants to consult with the medical team again after seeing Jackson today, then finalize the plan.

Also, he suspects that Jackson has sleep apnea, which adds another layer of complexity and risk to open heart surgery (should that be the route they decide to take). So Jackson is now scheduled to see an ENT doctor at the end of the month. A combination of heart problems and sleep apnea would definitely explain his extreme fatigue.

Jackson has never been a fan of sleeping, but it's been worse lately. He might go to sleep at 11pm, then get up at 3am, or he might wait until 3am to even go to sleep. Sometimes he'll just sit in the bed and rock back and forth for hours. And Darrell said that the other morning when Jackson woke up, he was gasping for air.

If Dr. Fraser decides on open heart surgery, it would involve attaching a tube to Jackson's artery in two places to bypass the most severely constricted section. Although doctors are obligated to tell you the risks, it's hard to hear words like "death" and "paralysis" as possibilities. Plus, because of Jackson's age, it would have to be done again when he outgrows the tube. Needless to say, Angy and I weren't feeling chipper when that consultation was over.

Then we met with Dr. Petit, who performs heart catheterizations. He drew pictures to explain things and demonstrated the balloon procedure and the stent procedure, which was extremely helpful. Dr. Petit was contagiously optimistic that this less-invasive procedure would be all that Jackson needs. The stent would have to be reinflated in five to eight years—because arteries in people with WS continue to thicken on the outside, constricting the inner passageway—but that would be infinitely better than repeating major surgery. Plus, it would require only an overnight stay in the hospital.

We gave two thumbs up for the stent. Now our prayer is that this will be the medical team's decision and that the procedure will be successful. (Dr. Petit said there was always a chance it wouldn't work and Jackson would require the surgery anyway.)

The worse part about the visit today was seeing Jackson go through the trauma of the exam. (It's late and I'm tired, so I'll write about that in another post.) The best part was just spending time with that precious child.