Of surgery and sovereignty, part 1

In late July, Jackson had his annual exam with his cardiologist, Dr. Wolf, who scheduled an MRI for 2 weeks later to check out Jackson's stents. Next was an appointment with Dr. Qureshi, who replaced our beloved Dr. Petit as the heart catheterization (cath) doctor at Texas Children's Hospital. Dr. Qureshi said that Jackson would most likely need surgery to dilate the stents and he'd prefer to do everything at one time so Jackson wouldn't have to be under anesthesia twice.

We liked the plan. However, it meant that the combined procedure (the "cath lab") would be a month away instead of 2 weeks, so it would be even longer before we'd know about the state of Jackson's stents. Because it had been over 4 years since his previous cath surgery, we were anxious about how the stents were doing. Dr. Petit had said they would narrow over time and need to be dilated in a few years.

The more narrow they become, the more stress is on Jackson's heart and the worse he feels. It's a gradual thing, so it's hard for Angy to see a difference in how he might be feeling, which he's never been able to express anyway. We can only discern the basics, like when he's happy (which is, thankfully, most of the time), upset, or angry.

Jackson's verbal communications have improved, but we can't always understand what he's saying so we'll ask him to type it. On a computer, he'll type what he wants to convey in the browser search box, and on a phone, using the notepad. Angy could tell something was wrong with Jackson recently. She handed him her phone and told him to "type what's wrong." When he handed back the phone, Angy read, "What wrong." At least Jackson is a good speller.

The cath lab was scheduled for September 4 at 8:00 a.m., which meant a 6:00 a.m. arrival time. We were happy to be first on the schedule since Jackson can't eat or drink beforehand, and it's really hard on him (and us) if we have to wait a long time. At 6:00 the evening before, Dr. Qureshi's nurse called Angy and said they were moving Jackson back to 1:00 p.m. to do another patient ahead of him. They weren't sure what all was going to be needed in the first procedure and had no idea how long it would last, so who knew when or even if Jackson's would be done. But the nurse assured Angy repeatedly that regardless of how long the first procedure took, Dr. Qureshi would do Jackson's afterward.

Angy checked with the nurse the following morning before we left to make sure that everything was on schedule and that Jackson's cath lab would indeed take place that day. She was assured once again that it would. So we arrived at Texas Children's by the appointed time of 11:00 for the 1:00 procedure. Jackson was so nervous by that time that we could feel the car move as he jiggled his legs. But walking down the hall toward the surgery waiting room, Jackson led the way in his recently developed attitude of "let's get this thing done." What a brave boy he is. As he reached for the door handle, Angy got a call from the nurse and told Jackson to wait. Incredulously, Angy was informed that his cath lab would be rescheduled.

It's difficult not to be incensed when you feel like your child is being treated like he doesn't matter and you're getting jerked around. Angy told the nurse that we would wait at the hospital until we were given a new date and that it had better be soon. She also expressed her displeasure about receiving assurance a mere 2 hours ago and now being told to just go home. We waited quite a while for the nurse to call back. She said that Jackson's new appointment was on October 6, which was another month away! Having been told by his cardiologist back in July that he needed an MRI as soon as possible, that just wasn't acceptable.

Angy let the nurse know that we would continue to wait while they came up with a better solution. As we waited, we talked about God's sovereignty, how nothing happens without His permission, and how His timing is always perfect. We talked about how God knows all things, and apparently, that day wasn't the right one for Jackson's cath lab. Reminding ourselves that God is in 100% control of every detail in every situation helped to calm us down and keep us from chewing out the nurse. The next call Angy received was just more of a frustrating runaround. She was finally told that they would have to get back to her about a possible earlier date.

I can't explain how disappointing it was to go through all the planning and preparation that one of Jackson's hospital stay requires, to look forward for a month to getting it over with, and to get all prayed up and psyched up, only to have it not happen. But the knowledge of God's sovereignty made it all okay.

Playing with his hair in the car

On the way home, we had to stop at Walgreen's so Jackson could get some scented body lotion (yes, had to). After dropping Angy off at her house, I brought Jackson home with me, so at least I didn't burn a vacation day for nothing. Finally able to eat, Jackson got to enjoy a big cheese quesadilla, then an afternoon of lying in my bed, watching Team Umizoomi videos, inspecting his 5 new body lotions, and getting foot and hand massages. It turned out to be a good day after all.

The next day, Angy received the news that Jackson's cath lab would be the following week on September 10 and that he would be first on the schedule. Thank you, Lord!

Since I got so wordy describing the events leading up to the actual surgery, I'll save that for the next post (soon to follow). In the meantime, let's remember that:

The Lord has established His throne in the heavens, and His sovereignty rules over all (Psalm 103:19).