Saturday, June 11, 2016

Look who's 18!

June 1, 1998: Jackson came into the world crying. And he couldn't stop. A doctor privately told the new daddy that his son probably wouldn't make it through the night.

June 1, 2016: Jackson started the day bursting with smiles. "Happy birthday!" he exclaimed as his mom walked into the room. He just couldn't wait for it to be said.

"Jackson's 18?" asked little Sara. "Yes," 9-year-old Christian replied, "he's a premature adult." I haven't heard that phrase before, but it's actually a good description.

In the weeks prior when Angy would ask Jackson what he wanted to do on his birthday, he always said "hotel." What he likes best about staying at a hotel are the little toiletries in the bathroom. It seemed an expensive way to get "free" travel-size toiletries, so she hoped he would change his mind.

Angy asked again on the big day what he wanted to do. "Bath & Body Works." (Good call, buddy.) They spent an hour in that little store while Jackson took his time examining all the products and happily dancing to the '90s music being played.

He finally settled on $60 worth of scented products in the usual quantity of two each. When Christian saw the purchases later, he noticed that Jackson had selected two men's fragrances, which he normally doesn't do. "Now," Christian proclaimed, "you're a true man."

Jackson brought a few of his treasures to our Sunday gathering. Do you see the little bottle without a matching pair? Angy bought that one for herself, but Jackson confiscated it.

Since he doesn't like cake, we put together a bowl of birthday candy filled with two of his favorites—strawberry gummies and butterfly gummies. I also made Jackson a card and put some cash in it so he could do more shopping. I love that he took time to study his card and reread it.

It said in part: "Through all of your ages and stages, you've been a
beautiful, bright light in our family—a marvelous blessing from God."

My mom, Jackson's beloved Mema, always said she wanted to live long enough to see him turn 18. She missed it by only 6 weeks.

When Angy would bring Jackson to visit her in the hospital, she had to assure him that he wasn't going to have anything done. Naturally, he doesn't like hospitals (except for the gift shops, that is). And he didn't like seeing the hospital bed in Mema's living room when she was under hospice care.

During the 10 weeks she was sick, Jackson continued his usual mantra of "Mema's house" because he always wanted to go there. When Angy told him about Mema's passing, he didn't show any reaction. But when she asked a few days later if he wanted to go to Mema's house, for the first time in his life, Jackson said "no."

With Mema in November

Less than a week after his birthday was his annual checkup with the cardiologist. We were apprehensive about it, given that each year Jackson gets heavier and the time for his next medical procedure gets closer. Every few years, he has to have something done, and it's been two years since his stents were dilated.

A lot of prayers went up from Angy, Darrell, and me. Here's how our gracious, merciful God answered. (You're just going to have to forgive me for the excessive use of exclamation marks.)
  • Jackson's stents still look great, so no surgery this year!
  • Although he's always had an enlarged heart and high blood pressure, which can enlarge and harden the heart even more, his heart has actually gotten smaller!
  • The cardiologist said that when he watched the echogram, had he not known about Jackson's high blood pressure and aortic stenosis, he would have thought he was looking at a normal heart!
  • Instead of Jackson aging out of the fantastic Texas Children's Hospital now that he's 18, he'll be in a new program for adults with special needs and receive medical care through Texas Children's for the rest of his life!
Wow, Lord. Just wow.
Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen (Ephesians 3:20–21).
And that's not all. Jackson generally hates going to the doctor and gets majorly distressed when his blood pressure is taken, but this visit was actually joyful!

When the nurse rolled the blood pressure machine into the room, Jackson started rocking and singing, then pointed to the machine and said "blood pressure." The whole time on the exam table while she took his pressure in all four limbs, his big smile never faded and he kept on singing. Angy asked if he was "loving life" to which he replied "YEAH!"

Wow again, Lord.

Afterward, Angy took him to Walmart to spend some of his birthday money. As he bounded across the parking lot back to the car with a bag of Axe body spray and a huge smile, she remarked that it was a good day. Jackson heartily agreed, "GOOD DAY!"
This is the day which the Lord has made; Let us rejoice and be glad in it (Psalm 118:24).
Jackson has had quite a journey so far. And I'm so blessed to have been a part of it. My hope is to live at least long enough to see him turn 40. But if I miss it by 6 weeks, well, that would be close enough.

Monday, August 24, 2015

A Saturday with my boy

Jackson was so excited about coming over on Saturday that Angy had a hard time getting him to bed Friday night. And why wouldn't he be excited? Jackson knew that pancakes, Axe body spray, and foot rubs were in store.

That hair, those lips!
Seated in one of the big booths in the middle of Denny's, the day was off to a good start. Again, we had a lovely waitress who paid special attention to Jackson. No matter that she got our order wrong and was slow to refill my cup. Her attitude toward my grandson is what garnered her a 30% tip.

Jackson had his usual pancakes and orange soda. I had my usual pancakes, bacon, and coffee. Although I considered getting a waffle instead, when I asked Jackson if I should, he shook his head.

Here's how much of the rest of our breakfast conversation went:
"Are your pancakes good?"
"After breakfast, we'll go to Walmart."
"And remember, you're getting only two cans of Axe."
"No, two."
<Solemn stare>
"And then we'll go to my house."
<Big smile>
"Yeah! Nana's house."
<Long pause>
"Are you excited about football season?"
"Are you gonna watch the Texans play tonight?"
<Long pause>
"I love you, Jack."
"I'm so glad we get to spend the day together."
You've gotta love the boy's enthusiasm.

When the only thing left on my plate was the excess syrup, I wiped my hands on the condensation from my water glass, rubbed my hands together, and dried them with my napkin. Jackson watched closely. So I explained what is probably the redneck way to clean your hands after a meal. He then did it like a pro and, judging by his expression, thought it was pretty cool. How could I have missed teaching him this valuable lesson before now?

At Walmart, Jackson leads; I follow. He went straight for the deodorant aisle and selected two twin packs of Axe. "Two," he said. Good try, buddy.

I pointed out that there were actually four cans in two twin packs and specified that he could get either one twin pack or two individual cans. (He's already got dozens of cans of his current obsession.) Several minutes of tough negotiations followed.

Jackson finally walked away with two cans. And I strutted behind with the sound of Tom Petty's voice in my head. I will stand. My. Ground ... And I won't. Back. Down. (You know that's how he sings it, right?)

Like a man on a mission, Jackson plowed ahead to a display of travel-sized toiletries in the main aisle. Immediately zeroing in on a particular bin of assorted items, he shoved his hands in and pulled out two small cans of Axe from beneath the pile. How'd he know they were in there? It's like he's got a sixth sense about smelly stuff.

"Alright, you can get those," I sighed, thinking that at least they were just a buck apiece. Turns out they were $2 each. When I realized that Jackson ended up with the equivalent of three cans, Tom Petty stopped singing. All I heard was a "still small voice" (as King James put it). Pride goeth before destruction, and a haughty spirit before a fall.

As we drove to my house, Jackson reached over and clasped my hand, intertwining our fingers. I love it when he does that. And it's a good thing I can drive just fine with one hand because there's no way I'm letting go of his.

Settled in front of my big new monitor with his Axe and an orange soda, Jackson played video games, listened to music, and checked out the full range of scents available for his next purchase of Axe. But most of the time, he played with airplane flight simulators. For years Jackson has been studying control panels and practicing to be a pilot. I have no doubt that if you put that boy in a cockpit, he'd know exactly what to do.

Jackson's a fan of repetition, and he usually had "Thinkin' Things" song loops playing in the background. But I liked it better when he'd switch to Animusic – Cathedral Pictures.

I sat beside him most of the day, doing things like reading, playing on my phone, and filing my nails. That was in between the many times that Jackson would throw his leg in my lap, point to his socked foot, and hand me a can of Axe so I would massage his foot with it.

Since I never take Jackson home anymore (as explained in the second half of my June 2012 post), Darrell came by to get him after work. Angy said that when Jackson got home, he sought her out to tell her about his day.

What did he say? Nothing. Just waved his hands excitedly, made happy noises, and grinned like he was about to burst.

I know exactly what you mean, buddy. I had a great time too.

Sunday, June 7, 2015

The burning of the candles

I've always longed to know what Jackson is thinking. To hear him express his thoughts and feelings with words. But at least he can use a few words, either spoken or typed, to let us know what he wants. I'm thankful for that.

Since pictures can speak volumes, I'm taking the liberty of projecting what could have been Jackson's thoughts during the protracted process of blowing out candles on his 17th birthday.

Don't like cake, but I'm lovin' these candles.

The flames are simply mesmerizing.

I hear what you're saying ...

You too ... so just to make y'all happy ...

There ... the 1 is done!

Now I'm gonna think about the 7 awhile ...

Alrighty, I'm goin' back in ...
Oh yeah, I'll take that applause!
Not shown during the burning of the candles: Jackson reading for a second time the card I made him—all 90-something words of the message! (He's always been a good reader.) That boy really knows how to make a good thing last.

For gifts, Jackson got various fragrant products and money to buy more. He had a fun time shopping at his favorite places—Target, Walmart, and Bath & Body Works. Every time Jackson got his hands full of lotions and other fragrant items, he would drop them in the basket and exclaim, "Happy birthday!"

Keep enjoying your life, Jackie boy. Take your time to make the good times last.

Saturday, December 27, 2014

Keeping things interesting

Finding gifts for Jackson isn't easy, but it sure is interesting.

Of the Christmas gifts he received from me and his poppy, Twisted Peppermint body lotion was Jackson's favorite. I'm just glad I was able to come up with some other things this year he would like that weren't from Bath & Body Works or the gift card rack (although he did get the requisite Bath & Body Works gift card).

To accommodate some of Jackson's other obsessions, we gave him a foot massager and a massage ball, as well as a pedicure kit so he doesn't have to wait for a visit to my house to have the full-blown treatment.

Getting a hand massage with his new massage ball

For his room, we gave Jackson fabric posters of his favorite rock bands—Linkin Park and Rage Against the Machine—plus an Uncle Milton Rainbow In My Room Nightlight Projector. (Thank God for Amazon, or I'd have to visit several different types of stores to shop for Jackson.)

It was such a joy watching him open gifts. But when he opened one box and saw just the tissue paper, he set it aside, then looked toward the pile for his next gift. I'm sure that one was a disappointment until I showed him what was beneath the paper.

Sitting on Mema's lap Christmas Day
(Don't try this at home)

Two weeks before Christmas, Jackson spent the night. First on the agenda was the Christmas concert given by Symphony North of Houston. Between some of the songs, Jackson would turn to me and gleefully exclaim, "Hi!" He was obviously enjoying the performance. But when I asked during intermission if he wanted to wait and hear more music or go ahead and leave, he replied, "Walmart."

He must have been paying attention to my phone conversation in the car earlier when I mentioned going to Walmart after the concert so he could pick out some snacks. It was probably at the forefront of his mind the whole time.

When we entered the store, Jackson made a beeline for the toiletries. I tried to talk him out of getting two deodorants, especially since he had two in the car, but we both knew I would cave.

Jackson then selected cheese and crackers, macaroni and cheese, and candy. I suggested some breakfast foods for the morning, but he didn't want any. I wonder ... did he think if none of his breakfast foods were in my kitchen that I'd take him out for pancakes? That's exactly what happened, so maybe it was by design.

He was happy to be at Denny's. So was I. We had good pancakes and a great waitress. I appreciated that she took note of Jackson's name as I spoke to him and that she called him by name when she returned to our table. Then as we were leaving, she called out, "Bye, Jackson!" I was compelled to turn back, double her tip, and thank her for being kind to my grandson.

I guess some people ignore Jackson because they don't know how to interact with him. But really, all they need to do is simply acknowledge him. Just talk to him like they would any other kid. Even if he doesn't respond in some way, that doesn't mean he doesn't appreciate it. And you can bet I do, even if I don't say so.

Ready for a shave
After breakfast, spa day began. I gave Jackson a mani-pedi, hand and foot massages, and for my first time, a shave. (His 'stache remains, but that scraggly goatee had to go!) We brushed his teeth, combed his hair, and put some of that deodorant where it was meant to be.

Angy told me the next day that Jackson must have had a good time because he kept talking about me. "What was he saying?" I asked. "Nana," she replied. Awww ... to me anyway, that says a lot.

Tuesday, September 16, 2014

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!

Saturday, September 13, 2014

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).

Sunday, July 20, 2014

A good day for dental surgery

Jackson has a high tolerance for pain, so when he spent an entire night pointing at his tooth and crying, Angy knew it was bad. Christian and Sara tried everything they could to make their big brother feel better, but nothing seemed to help. And since Jackson cried all night, Angy did too.

She was able to get him in quickly to see his dental surgeon at Texas Children's Hospital, which is quite unusual, even for a dental emergency. The problem was a broken and infected wisdom tooth, so the visit netted Jackson pain medicine, antibiotics, and a date for surgery two weeks away.

When Jackson has his teeth worked on (which always includes a deep cleaning and whatever they find that needs fixing), it's by the dental surgeon and under general anesthesia. Since it's a big deal for a child with aortic stenosis to have anesthesia, Jackson has to be examined by his cardiologist first. His annual checkup happened to be the following week, so everything was falling into place, and the appointment went well. Jackson's blood pressure is still high, but it's what's normal for him, so he got the green light for surgery. (An MRI under light sedation will follow in a few weeks to check out his stents.)

The dental surgery was infinitely better than our last experience about five years ago. By the time we were called to the recovery room back then, Jackson was awake, freaked-out, and inconsolable. For hours, he fussed, cried, made loud guttural noises, gagged, and threw up blood. At one point, it took four of us—two nurses, Angy, and myself—to restrain him. As we struggled, I slipped in some of his vomit on the floor and wrenched my back. It was a tough day for all of us.

This time, however, we were in the recovery room before Jackson came to. I think that helped, plus the fact that he's older and more accustomed to hospital visits. Like I told him in the car on the way there, he's getting to be a pro at this kind of stuff.

The instant Jackson opened his eyes, he had a sudden look of terror. Angy and I rushed to his side to calm him down. The nurse quickly removed his oxygen mask and the tube from his throat. Jackson gagged and threw up a few times, and although it took almost three hours before they let him go, there was none of the ruckus like last time. Thank you, Jesus.

I came prepared with an attachment from my back massager that Jackson likes me to use on him. It's flat on one side and round on the other, so I palm the flat side and rub his back with the round side. I did it pretty much nonstop.

Jackson said "iPhone" to Angy because he wanted to listen to music. Even though cell phones are prohibited in the recovery room, the nurse said it would be OK. (Good nurses are worth their weight in gold.) He first listened to Linkin Park. The nurse smiled and said it wasn't what she was accustomed to hearing in the children's recovery room. Then he listened to Florence and the Machine, Beastie Boys, Black Eyed Peas, and ... Mickey Mouse. Between the music and the back massage, Jackson was able to remain calm.

He wasn't as nervous and anxious beforehand, either, as previous times. When a nurse called us from the waiting room for some prep work, Jackson walked ahead of us, as if eager to get it over with. She held open the waiting room door as we walked through, and Jackson forged ahead like a man on a mission. Since he seemed to be leading the way, the nurse called out directions: "To the right, through the doors on the left, and it's the first room on the left." Jackson went straight to the room, opened the door, and took a seat as we filed in behind him. I found that to be somewhat amazing.

When it was time for the surgery, Jackson led the pack again with his "let's do this thing" demeanor. He walked ahead of the anesthesiologist and the nurse, with Angy and me bringing up the rear. As we reached the double doors, we were told to return to the waiting room and they'd call us when he was in recovery. It seemed strange to see Jackson just walk off with them like that. A memory flashed in my mind of us watching him as a toddler being pulled away in a red wagon to surgery. Things sure have changed.

Some things remain the same, though, like Jackson's affinity for the gift shop. He pointed at it when we arrived at the hospital, and I told him that afterward he could get whatever he wanted. He smiled and said in his sing-song voice, "I love you." Angy said that when she brought him for his appointment two weeks prior, the exact conversation took place between the two of them, even down to him saying, "I love you," at the same spot. What a precious deja vu moment.

It was after 4:00 by the time Jackson was released. He was still feeling the effects of the anesthesia and didn't even seem to notice the gift shop as he was wheeled past it. At least while we were waiting, Angy had the foresight to get him a treat from there that he could enjoy the following day. But next time, we're going to arrive extra early so that boy can visit the gift shop before his surgery.

All in all, things couldn't have worked out better, even traffic-wise. Traveling to the hospital that morning, we had two near misses on the freeway because of other drivers not paying attention. If either one had happened, it would have been a serious accident. Mere inches and split seconds made the difference. And driving back from the Medical Center in 5:00 traffic could have taken hours, but we kept moving the whole way home.

Although two weeks was a long time for Jackson to wait to get his tooth fixed, it gave us more opportunities to pray and seek God's favor upon the day. The Lord heard, and He was gracious to us.
Give ear, O Lord, to my prayer; And give heed to the voice of my supplications! In the day of my trouble I shall call upon You, For You will answer me. There is no one like You among the gods, O Lord, Nor are there any works like Yours. (Psalm 86:68)