Another hill to climb

Darrell reported that the only real difficult part of the sleep study for Jackson was the prep work. Dozens of electrodes were attached all over Jackson's head and body, and each spot where they were attached had to be shaved of the top layer of skin first. It was a long and trying ordeal, and worst of all, the medical staff wouldn't allow Jackson to rock back and forth while they were doing it. Sheer torture.

I didn't know what to expect, and when I saw these pictures Darrell snapped with his phone, I was shocked.

Considering that Jackson won't normally tolerate a bandaid, is it anything less than a miracle that he endured all these constrictions, including a pulse monitor on his finger (which he absolutely hates), and slept peacefully through the night? Yes, the Lord caused a deep sleep to fall upon him.

For those of you who knew about it beforehand and prayed for Jackson, isn't it a special joy that God allowed us to share in what He was doing?

The next morning, Darrell learned that the technician who monitored the sleep study had advised that Jackson be taken immediately to the emergency room. Instead, the nurse contacted the ENT (ear, nose, and throat) doctor, who decided not to send him to the hospital and just see him at the scheduled appointment the following morning.

Jackson has never been a good sleeper, and now we know why:

• He has a severe case of complex sleep apnea, which is a combination of the two kinds of apnea: central (brain related) and obstructive (body related).
• If a child has just one incident of sleep apnea in an hour, treatment is required. In one hour, the technician observed Jackson having 16 central incidents and 80 obstructive incidents, a total of 96. (No wonder she wanted to send him to the ER.)
• This makes Jackson's already-stressed heart work harder and contributes to his high blood pressure.

Here are the treatment options:

• Removing his tonsils and adenoids won't help with the central, but will help a little bit with the obstructive, so that surgery will be scheduled.
• Jackson will also have to sleep—for the rest of his life—with a continuous positive airway pressure (CPAP) device, consisting of a machine pumping oxygen into a mask strapped to his head. (Of all things for a boy who hates having anything on but comfy clothes!)
• If Jackson won't tolerate the mask, there's a permanent solution, but not a desirable one—a tracheostomy. This is different from a tracheotomy in that the hole in his throat would be permanent and be closed off with a cap during the day. (Please, dear God, not that.)

Praise the Lord that we're getting some answers. Although it's scary to find out just how precarious and fragile Jackson's condition is and has been all these years, it's comforting to know that God has been keeping his little heart beating against all odds.

We'll keep praying and expecting miracles, including that Jackson will accept his oxygen mask.

My soul, wait thou only upon God; for my expectation is from him. (Psalm 62:5, KJV)

Another matter for prayer

Jackson didn't have any tests this week as the ER doctors indicated. His cardiologist just doubled his morning dose of medicine (the ER doctors had already doubled his evening dose).

Kids with Williams syndrome often have high blood pressure because all of their arteries can constrict. So while we're assuming that Jackson's BP will probably always be higher than average, we're praying that the doctors will prescribe the right medicine in the right amount to keep it from getting dangerously high again.

Jackson also suffers from what is probably sleep apnea, a potentially serious disorder. He sometimes wakes up throughout the night unable to breathe and often making dreadful noises. Then he stays sitting up in bed, just rocking back and forth. Those are long, tough nights for him as well as Angy and Darrell.

Tomorrow (Wednesday), Darrell and Jackson will be spending the night at a Texas Children's Health Center near their home for a sleep study. Please pray that God will give Jackson the grace and endurance to handle whatever is in store for him during this unwanted sleepover.

If the doctors confirm that he has sleep apnea, the first step in treating it would be to remove his tonsils and adenoids. If that doesn't work, the next step would normally be for him to sleep with a freaky-looking mask that pumps oxygen, which of course, Jackson would never do. (You know what we'll be praying about later.☺)

Thank God for prayer! He's going to take care of Jackson regardless, but prayer gives us the blessing of participating in what God is doing in Jackson's life. Prayer also gives us strength, comfort, and peace because we can pour out our heart before the omnipotent Creator of heaven and earth and all that is in them, knowing that He listens with understanding and responds with compassion.

Besides, we're commanded to pray—and not worry!

Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus. (Philippians 4:6–7)

Thank you for joining us in praying for our precious boy. It truly does make a difference.

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.