I picked up Jackson and Angy early that morning. Even though she and Darrell had explained to Jackson where he was going, that sweet boy came bounding out of the house with a huge smile on his face, just happy to be getting in Nana's car and going somewhere. But about halfway to the hospital, he started saying, "Home." It remained his mantra throughout the unexpected four-day stay in the hospital.- For two hours in the waiting room and another hour in the pre-op room, Jackson rocked back and forth. Only once did he stop long enough to flash his "angry hand" (see photo).
- The kind nurse in the pre-op room accommodated Jackson by letting him sit in the chair instead of lying on the bed and by removing the tight ID band from his wrist (which came back loosely on his ankle later).
- Jackson was in surgery for four hours. The procedure normally takes about two hours, but Dr. Petit took extra time with Jackson's special case. He first attempted the balloon procedure, but it didn't work as he anticipated that it wouldn't. At the end, he had implanted two overlapping stents in the upper part of Jackson's aorta.
- In the many pictures they took of Jackson's insides during the procedure, Dr. Petit discovered that Jackson has scoliosis of the spine. This too can be causing him pain, and if it worsens over time, especially if Jackson develops additional curves to either side, it will put pressure on his heart and complicate his condition.
- Instead of the usual two hours in recovery, we were told that Jackson would be there for six hours, which turned into over eight. Even so, calming him in the recovery room was much easier than in past procedures (the regular doses of sedative certainly helped). The nurses gradually began removing tubes and leads and all types of connections from that poor boy.
- That evening, Angy and Darrell switched out (one always had to be at home with Christian and Sara). It was a tough night, beginning with Jackson getting upset when they brought the portable x-ray machine into the recovery room.
- After a doctor examined the x-ray, he told us that one of the stents had moved and they needed to get a better look with more x-rays taken in the normal fashion. The nurse waited until we were about to leave for the x-ray room to give Jackson another sedative, because although it was fast acting, it didn't last long.
- We were in the x-ray room for an hour, waiting on the technicians to complete their shift change, waiting on the technician to check the x-rays after taking and retaking them, trying to comfort Jackson, praying that the sedative wouldn't wear off, and trying to get a drugged-up, resistant, 160-lb boy in pain to get in uncomfortable positions and remain perfectly still.
- Darrell was suited up in one of those protective lead coats helping the nurse, and I was huddled with another nurse behind a protective piece of plexiglas, alternating between crying and calling out encouragement to Jackson.
- It was well after midnight when we got into a room. Jackson had to continue enduring blood pressure checks, temperature checks, and every other kind of check they could come up with. The doctor finally came back in with the news that one of the stents had moved to a "dangerous place" and Jackson would require surgery again in the morning. That was a low point.
- During the wee hours of the morning as I lay on the hard couch facing Jackson (Darrell was on the floor), I opened my eyes to see him staring at me. "Home," he said. All day long, we had been telling him, "Tomorrow." Now I couldn't even say that.
- Déjà vu. This time, Dr. Petit implanted a third, larger stent beneath the one in the upper portion of Jackson's aorta and moved the bottom stent to a safe place. As low as it still is, however, there's a possibility it could cause Jackson stomach pain. Moving it any more than necessary is dangerous because there's always a risk of tearing the aorta.
- The procedure is a delicate balancing act of getting the stents precisely the right size—big enough so they don't move but not so big that they damage the aorta. Jackson's high blood presssure (it got up over 200 that morning) had expanded his aorta and allowed the stent to move in the first place, so it was crucial to get his blood pressure under control.
- Jackson was in the ICU for the next 24 hours with a blood pressure cuff on his arm that activated every 10 minutes in the beginning. Although he was kept sedated, he was never completely out, so Angy and I sat with him, comforting him as needed, until we finally crashed for a couple of hours in fold-out chairs in the cold waiting room. (Have you ever been so tired that you would just keep shivering instead of getting up and asking for a blanket?)
- Jackson was weaned off the sedatives and all the hookups, except for the IV, and moved to a room around noon. We were amazed that the entire time, this boy who's never tolerated a bandaid endured IVs in both hands. It was an absolute miracle.
- He was constantly being poked and prodded and also had a bladder scan because of an injury sustained when his urinary catheter was removed after the second surgery, and he consequently urinated blood for a couple of days.
- When Jackson was upset while being poked and prodded, we would caress him on his arm, his leg, his chest, whatever we could reach. I also introduced Jackson to foot massages. After the first one, I told him whenever he wanted another to just say, "Feet." He said it quite often and would even point to the bottle of lotion when he was ready for more.
- That afternoon, Mema and Rex came for a visit, which lifted Jackson's spirits as it did mine and Angy's. Jackson was returning to his old self, blowing kisses and being so sweet.
- But early that evening, the overly cautious attending cardiologist, who didn't consider Jackson's special needs, moved us to another room (and away from our good nurse to a Nurse Rachet type) that had all the monitors and hookups like the ICU. We were back where we started and we were very upset.
- During the night, Jackson had to endure blood pressure checks every 30 minutes and wasn't on the sedatives he was in the ICU. The nurse wanted to leave on the cuff (which traumatizes Jackson) to keep from having to come back every 30 minutes and put it on. So instead, Darrell and I watched the monitor count down and right before it was time for another check, Darrell would put the cuff on Jackson and we would caress and try to calm him.
- In between that, Jackson had to use the restroom often because of all the IV fluids. And the urologist wanted him standing up instead of using the bedpan to help empty his bladder and flush out all the blood. So as soon as Jackson would flash his "restroom" sign, Darrell would have to unhook him from the monitor, which would then beep loudly, and remove the pulse monitor from his finger, and we would hastily get him out of bed while frantically untangling the IV tube and pushing the IV stand behind him before it ripped out. This went on all night.
- As if that wasn't enough, Jackson got a portable x-ray during the night and another bladder scan. When someone else came in to have him stand on a scale so she could record his weight (again), I told her to get out.
- The cardiologist team swarmed around Jackson early that morning, checking him more and fretting about his blood pressure. I kind of went off on them—saying that they were the reason his blood pressure was staying high and that since they had tortured and traumatized Jackson all night long, how did they expect his blood pressure to get better? (I hope those interns learned something about treating patients instead of problems.)
- We discovered that even though Dr. Petit said Jackson would need to be on blood pressure medicine for at least two months, the attending cardiologist had stopped giving it to him on Sunday to "see how he would do." She now said that she didn't know when Jackson would be released, that it could be several days more. So our response to Jackson's continual requests to go home had gone from "Tomorrow" to "Monday" to "In a few days."
- We were also told that the stent had moved again and that Jackson was going back to the dreaded x-ray room. In the meantime, he got an echogram in addition to the continuing but much-less-frequent blood pressure checks.
- When we finally got to see Dr. Petit that afternoon, he said that the bottom stent had moved only a tiny bit and was still in a safe place, that Jackson didn't need any more x-rays, that he had been excessively monitored, and that he should be released sooner than later. Hallelujah! The situation went from awful to awesome in a matter of seconds.
- We were also blessed that day with an absolute angel of a nurse, Ann. She was wonderful and sensitive to Jackson and to us, bent the rules a bit when it made sense to do so, and advised us to "get noisy" if we felt that a doctor wasn't making the right decisions for Jackson.
- Even after Dr. Petit told the attending cardiologist that Jackson didn't need any more treatment and should be allowed to go home, she sent one of her minions in the room to tell me that Jackson would still be going down to x-ray. I firmly told her no, that they were through torturing him, that they were done, and that I had been trying to teach Jackson to say "No mas" if they tried to do anything else to him. As Ann stood in the background, she smiled and winked.
- It wasn't long after that when we got our marching orders. We packed up, did all the discharge duties, and waited on a second dosage of Jackson's compounded liquid medicine to take home. We already had the one dosage allowed by the hospital, but not many pharmacies do compounding, and Angy and Darrell wouldn't have been able to get the prescription filled in time for Jackson's next dosage. So Ann "forgot" that she had already given us one and managed to get another from the hospital pharmacy. God bless her.
- When I was hugging Ann goodbye, Darrell and Jackson were already taking off down the hall, excited to be getting out of there. Even though Jackson was incredibly bruised on both sides of his groin from the two surgeries, he had a lively spring in his step.
Jackson is limping around now and has to take medicine and get his blood pressure checked at home twice a day, but at least he's where he wants to be. Here's a photo of him on Wednesday with the gigantic balloon bouquet tied to a teddy bear that our family at Grace Bible Church gave him, along with a delicious home-cooked meal (thanks especially to Lynda, Marilyn, and Leslie).
Please pray that Jackson heals quickly and completely from the two surgeries, that the stents remain in place, that the lower stent doesn't cause him any stomach pain, that his blood pressure gets under control, and that the scoliosis doesn't progress.
The entire time at the hospital, I felt God's faithful presence in such a sweet way . . .
You have enclosed me behind and before, and laid Your hand upon me. (Psalm 139:5). . . and I felt your fervent prayers. Thank you.
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