Jackson got two new stents, so he now has a total of five. (We might start calling him the Tin Man.) The new stents are a different kind and are inside two of the original stents, one of which had closed up so much his aorta was the size of a newborn baby's. (No wonder his poor little heart was working so hard!) During the first surgery in January, the stents were ballooned to 9mm, and this time to 12mm, making Jackson's aorta the size of a 3-year-old's.
We went through the usual hassle with doctors and nurses being unfamilar with Jackson's case, having unrealistic expectations, freaking out over his BP (although being in the 230s is indeed stroke territory), and overtreating him. As Angy, Darrell, and I took turns staying with Jackson, we all had to stay on top of the medical staff to prevent their unnecessary torture of our boy. The physical, mental, and emotional fatigue of being in the hospital, taking care of Jackson, and dealing with the well-meaning but often misguided medical staff left us drained and exhausted. I'm so thankful we don't have to rely on our own strength.
I love you, O LORD, my strength. (Psalm 18:1)We found out Jackson also has a slight stenosis in the aorta leading to his kidneys. Since the cardiologists have done all they can do at this point, the renal doctors are taking over Jackson's case as it relates to his BP medicine. They increased the dosage he takes mornings and evenings and added a new medicine for the afternoon. There's a concern that the new medicine won't work long-term. If it doesn't, the only recourse will be a medicine with dangerous side effects and a hospital visit to monitor it. So please join us in praying that our gracious God keeps Jackson's BP down and his stents open.
Jackson had some really rough times in the hospital, especially during the tests and after the surgery in ICU, but by God's grace, he handled everything surprisingly well. Jackson even got so used to the BP checks that he would sometimes help wrap the cuff around his arm. And over the weekend when he was only having his BP checked and medicine adjusted, we got to pretty much have a marathon slumber party.
- We Christmas shopped online. About 100 times, Jackson showed me the body lotions he wants. Sometimes he would just look at me and say something while holding up two fingers. I knew he was talking about the lotion because he wants two of each. If he made a two-syllable sound, I knew it was "Pear Glace," and I could distinguish the five-syllable sounds as being either "Coconut Passion" or "Lost in Fantasy." I wrote them down (as if I could possibly forget after all those reminders) and Jackson checked my list to make sure it was right.
- We sang a lot. It was just two songs, though, over and over. "Hot Dog!" by the Mickey Mouse Club and "My Life Be Like (Ooh Ahh)" by Grits, a Christian hip hop group. Those catchy little tunes are indelibly etched in my memory.
- We danced a little. If those nurses had any idea what was going on behind our closed door, they probably would have kicked me out. Letting a kid with dangerously high blood pressure stomp around the floor? But it would last for only a few seconds, and Jackson looked so happy doing it. When he gets the urge, he smiles and says "dance" while flapping one arm like a chicken. Who could say no to that?
- We ate whatever Jackson wanted. Pizza delivered to our room, pancakes at the cafeteria across the street, Sunkist Fruit Gems from the hospital gift shop, and plenty of Fanta sodas. Angy wanted Jackson to drink at least one bottle of water, but he hates it and was dead set against it, so she told him to just chug it down and then he could have more soda. As Jackson forced himself to drink some water, we encouraged him by loudly chanting, "Chug, chug, chug!" He would slam it down on his tray table, and we would clap and cheer. Then we'd do it over again until the water was all gone. It must have sounded more like a frat party than a kid's hospital room.
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