Of surgery and sovereignty, part 2

Jackson was anxious the night before his cath lab and wouldn't go to bed until around 2:00 a.m. Angy was so nervous about him sneaking food or drink—rendering him unable to have anesthesia and forcing his surgery to be rescheduled yet again—that she barely slept even after Jackson went to bed.

Drifting into a light sleep, she was awoken by the sound of paper rustling in his room down the hall. Angy flew out of bed in a panic that he had smuggled food from the kitchen. She was relieved to find Jackson sitting up in bed with a bag of his body lotions. Maybe he was smelling the lotions to soothe himself.

When I picked them up in the early morning, Angy had slept only about 2 hours. Even so, she had to be my copilot and help me navigate the beaucoup lane changes on the already-crowded Houston freeways. Everything went like clockwork after that, and it wasn't long before we were called out of the waiting room. As soon as Jackson saw the bed, he shook his head and sat in one of the chairs beside it.

After the various members of the medical team came by to talk to Angy, it was time to prepare Jackson for the cath lab. They gave him an oral sedative so he could handle them doing the IVs and other pre-op stuff. When we noticed the sedative taking effect, Angy and I got Jackson in the bed, although not positioned correctly. He was so relaxed by then that he couldn't move himself, and he was too much dead weight for us to handle. It took 2 people on the count of 3 to move our big doll using the "lift pad" beneath him.

We kissed Jackson before they wheeled him away. Then we sat on the chairs next to the empty spot where his bed had been and prayed over every aspect of the procedure and every person involved. It's so comforting to know that Almighty God is sovereign, watching over all, and having His way in everything. We rested in the assurance that Jackson was in the best Hands.

Next was a tasty breakfast at the Bertner Avenue Cafe in the basement. That's right, I said tasty. It's one perk anyway that a visit to the hospital offers.

We spent the next 4 hours talking, able to enjoy our time together despite the circumstances. All the while, we kept in the back of our minds what our sweet boy was going through and kept sending up little prayers.

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 (Phil. 4:6–7).

Angy got regular update calls from David, one of the best nurses we've met. During the first call, he told Angy how he had been present at every one of Jackson's surgeries in the past and could recall details about them. He was reassuring, kind, amusing, and delightful. God bless you, David, and other nurses like you. What a difference you make.

Dr. Qureshi met with us afterward and delivered the great news that everything went as well as it could have. Jackson's arteries had substantial narrowing, and the blood pressure in his lower extremities was significantly higher than in his upper extremities. After dilating Jackson's stents, the difference went from 70 points to 40, far from ideal but a marked improvement. Hopefully, the surgery will leave him feeling better and more energetic.

But first he had to get through recovery, which is always a rough time for Jackson. We had asked the medical team to remove Jackson's breathing tube the instant he regained consciousness so he wouldn't freak out. All the tubes and paraphernalia that have to remain are bothersome enough, especially for a boy who can't even tolerate a band-aid. Adding to Jackson's distress was having to lie flat all afternoon, except he occasionally jerked upright to throw up from the anesthesia.

Because Jackson has a severe case of complex sleep apnea—a combination of central (brain-related) and obstructive (body-related) apnea—the anesthesiologist was perhaps overly cautious and had Jackson stay in the Pediatric Intensive Care Unit (PICU) overnight. If that happens again, I think we might argue against it. Sleeping in PICU is impossible, so Jackson never wore a sleep mask anyway. He definitely would have gotten more rest and been less stressed in a private room.

The stream of visits from hospital personnel is a steady flow in PICU. Every few minutes it seemed, someone would step in to introduce themselves, ask questions about Jackson, and often poke, prod, or check something. Several times when someone came to his bedside, Jackson dismissed them abruptly by saying "Bye!" in a commanding voice. One person even got a "Bye-bye!" the second she walked in the door. Jackson's words aren't always clear, but those sure were, especially since they were accompanied with a dismissive wave of his hand.

Jackson did, however, welcome a visit by a young, pretty nurse. He said "Hi" in his sweet, friendly voice, then pointed out his hair and his teeth for her to notice. She told him how handsome he was. Jackson was beaming the whole time she was there. The other bright spot in the afternoon came when Nurse David stopped by to say hello and spread a little cheer.

In the evening, Jackson got a roommate. Unfortunately, it was a post-op baby whose mother visited just briefly before retiring to the waiting room to sleep in one of the recliners. From about 10:30 that night until 8:30 the next morning, the poor little fella lay there by himself, crying off and on something pitiful.

Jackson was never alone for a second. Angy and I took turns staying with him and trying to get a little sleep in the waiting room. She tried first but couldn't get to sleep, so she came back to relieve me about 1:00 a.m. Two recliners down from the baby's snoring mother, I crashed hard and quick. Even though I'd had only 5 hours of sleep the night before, I woke up feeling rested after just an hour and a half.

So I told Angy to go try again, and she was finally able to sleep nearly 3 hours. Sitting in the uncomfortable chair in Jackson's freezing room, I was soon wishing that I could doze off. But it was merely a pipe dream. If the baby wasn't crying, someone was popping in—a nurse to take Jackson's temperature, a cleaning lady to empty the trash, and so on.

In between the crying and the constant interruptions, Jackson's monitor was blasting alarms. A nurse would come press a button on the monitor and occasionally adjust the electrodes stuck on his chest or the monitor taped to his finger. Then the alarms would soon start beeping again. I couldn't stop myself from counting the number of beeps before the nurse came back. It seemed to take her longer each time.

Sometimes when my eyes were closed, Jackson would say "Hi!" so that I'd look at him. Then he'd point to the area he wanted massaged, either his feet, hands, arms, or shoulders. Although the time seemed to go by painfully slow, I was still thankful to have the opportunity to be there with my Jack.

When Angy staggered back into the room after her nap, we got a little "judgy" (as she called it) about the snoring mother in the waiting room. And when Angy walked past her around 8:00 to grab some breakfast, the mother was sitting up in the recliner, wrapped in a blanket, and playing on her phone. I guess she wasn't even curious about how her baby was doing.

Half an hour later, the mother sauntered in with wet hair and wearing clean clothes, obviously having taken advantage of the shower facilities. It wasn't long before she was gone again. Maybe it was because I was running on empty and had a bumpy ride through the night, but that really burned my hide.

Who has to shower and shampoo after only 1 night in the hospital anyway? (We knew she had arrived the same day that we did.) I didn't even take time to brush my teeth—just picked them with an interdental cleaner and chewed some spearmint gum. Why leave a kid's bedside when you don't have to? At any rate, I like to think of myself as a devoted nana rather than one who's just happy to have an excuse for being slack with personal hygiene.

And I'll admit that I was tempted to say something judgy to the baby's mother. But instead, I just prayed for the little guy, that God would heal him, comfort him, bring people into his life who would take care of him, and someday bring him to faith in Christ. Even when there's nothing else we can do for someone, we can pray, and that's a lot actually. I also thanked God once again for giving Jackson to us, but this time I added "instead of to someone like her." (Was that wrong?)

When Dr. Qureshi made his rounds, he told us that he had ordered an ultrasound and x-rays to make sure Jackson's stents hadn't moved and that we could go home after he got the results. Then his nurse (the one we weren't happy with about all the rescheduling) came in and said that we didn't need to wait for the results, that Dr. Qureshi wouldn't be able to read them until later anyway because he'd be in surgery, and they would just call Angy with the results since the doctor didn't anticipate a problem. Yay! We were all anxious to get out of there.

The ultrasound took a while, and it was important for Jackson to remain still, but he jiggles his legs when he's nervous. So Angy massaged one leg while I did the other one, and we had to keep soothing him and reminding him to be still. Then the baby started crying again, which unsettled Jackson. Angy asked the nurse, firmly but calmly, to please get the mother to take care of her baby so Jackson's ultrasound could be done.

The nurse said that the mother "had some things to do." Angy then basically said to just get the screaming kid out of there, so the nurse removed him from the room. She and the other nurses took turns holding him until Jackson's tests were over. At least the little guy finally got held. (Oops, there I go being judgy again.) And by the way, the rooms weren't all full, so we questioned the judgment of putting a crying baby in the same room with a special-needs teenager who has dangerously high blood pressure.

All things considered, Jackson did surprisingly well with the ultrasound. But then came the dreaded x-ray machine. We don't know what it is about x-rays, but they upset Jackson terribly. They don't take long, nothing touches him, and he only has to remain still a few seconds for each picture. But that poor boy cries like he's frightened out of his mind and experiencing tremendous pain. It's absolutely heartbreaking to watch.

After that ordeal, Angy began getting him dressed to leave. The nurse said that the PICU doctor would have to review the test results and determine whether Jackson could be discharged. Uh-uh. That's not how it works. Angy told her that we would be following the orders of Jackson's doctor and no one else. When the nurse saw that we'd had enough of PICU, she ordered a wheelchair for Jackson.

Pondering hospital transport policies?

The minute the wheelchair arrived, Jackson walked over to it, sat down, folded out the footrests, placed his feet on them, and gave us a "let's go" look. That boy was ready!

We pushed him out of the room, but the nurse stopped us. It seems that she ordered the "wrong kind of transport." The one she should have ordered comes with a person to push it. Seriously? We just stood there in the hallway, too tired to argue. Then the nurse finally decided that she could push the wheelchair. (Deep breaths ...)

On the way home, we made the requisite stop at Walgreen's to get Jackson more body lotion—8 tubes this time instead of 5 since this was after the actual surgery. Then we drove through Chick-fil-A to get that starving boy something to eat. (He had tried a bite of the non-food-like pancakes in PICU and spit it out.)

That afternoon, I had the best nap of my life. Angy said that she and Jackson did too, until she was awoken by the little ones coming home from school. Five-year-old Sara, apparently not understanding her own words, greeted her groggy mother by saying, "I can't believe Jackson survived the surgery!" God only knows what was going on in that little head of hers.

We're so incredibly grateful that our Sovereign Lord took care of all the details and the timing of everything ... that He allowed the little trials and inconveniences (which we have no right to complain about) for His purposes ... and that He turned Jackson's distress into joy.

Inches from a clean getaway  . . .  then free at last!

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).