What happened on Monday changed our Tuesday. Read Monday first.
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Monday evening-Tuesday evening, February 9 & 10
Linford hates hospitals and hates sitting idly around even more. While I don’t love hospitals, I find the world they represent fascinating. As for sitting around, I’m a reader and a writer; I have no trouble sitting as long as I have words to distract me.
From the beginning, I told Linford that I didn’t expect him to stay and hold my hand. He could go home and work and be with Jenica and Micah while I held Tarica’s hand. But the doctor had told us to count on a ten-day stay, nine if all went well—and Linford wanted to give me a break midway through the week.
He made arrangements to bring Cassondra out on Tuesday, and she would stay with Tari while he took me away from the hospital for a little. I anticipated the date, but I dreaded leaving Tarica. She would want to leave the hospital as much or more than I would, but she had to stay to the bitter end. Why should I get a break when she doesn’t?
Monday evening, I called Linford and told him what had happened that afternoon in the scan room. “We won’t know until morning if both the PET and the MRI can be done tomorrow.”
“What about our plans?” he asked. “I think I’ll bring Cass out anyway.”
“She’s planning on it, so might as well. But if Tari will be discharged tomorrow evening, there’s no point in taking me away. I’ll be thrilled to take my break at home. Besides, there will be packing to do.” I looked at the cluttered room around me. “You’re going to complain about how much stuff you have to haul out of here.”
“I’m a little disappointed that we won’t get our date,” he said, “but I’m not sorry she’s coming home so soon.”
When Tarica awoke on Tuesday morning, I had news. “Do you know what’s happening today?” I asked her.
She yawned. “Daddy and Cass are coming.” She clutched at her head. “I want to scratch it, Mommy.” Her scalp had been growing increasingly itchy during the last two days, but she was forbidden to scratch.
“You will be able to scratch your head all you want tonight.”
She looked at me blankly.
“The nurse just told me that you’ll be taking two more tests this afternoon, and after the tests are done, we can go home.” I sat on the bed beside her. “Can you imagine? Just today yet, and then home. Tonight you can sleep in your own bed without any wires on your head.”
Her joy dried up the instant she realized she had to take her medication with Jello again. Yummy sugar-free orange this time. The PET scan uses glucose to help measure brain activity. She could have no extra sugar in her body, other than what the injection contained.
No. I won’t take it. And she turned her head and sealed her mouth.
The nurse was in a bit of a flap. Tarica’s stomach needed to be empty before she was sedated, and if this miniscule amount of food wasn’t swallowed soon enough, it could reschedule the tests. This she made me know with great urgency and much looming.
With Tarica, we have learned that urging and looming lock her up tighter than the county jail. I was relieved when the nurse was called away. While she was gone, I set to work, feeling the pressure despite myself, knowing I had no other recourse.
I cajoled. I begged. I threatened. I bribed. I joked. I retreated. I prayed. I coaxed. I pleaded.
I thanked God the nurse did not witness the scene.
At last, she yielded. Tarica, that is. When the nurse popped in, the medication was gone and I was a limp puddle of relief on the bed.
Now that Tarica had put something in her mouth, she couldn’t stop thinking about food. “I’m hungry, Mom,” she whined. “I want to eat.”
I had said it all already, yesterday, but I trotted out the same lines again. I know you are, sweetie. After the tests you can eat. You’re being so brave.
She was also being less than reasonable about it, unlike yesterday, and when I mentioned this to the nurse, she said that yesterday Tarica had received some sugar in her IV fluids. Today, she was getting none, because of the PET.
Tarica has never handled low blood sugar well. Linford and Cassondra were a welcome sight. At last, a distraction. We both needed one.
“The PET is scheduled for two o’clock,” I told them, “and she goes for the MRI right after that.”
Linford looked at the clock. “Good. Maybe we can be out of here by six.”
The eternal optimist. Perhaps this is why he and hospitals cannot get along.
I worked at packing and cleaning up. I returned books to the library. Cassondra and I went to the cafeteria for a quick lunch. When we returned, the two visual whizzes were mid-game on the floor.
After that was story time with Aunt Cass.
We had less than an hour to wait when the nurse bustled in. “Just got word that the PET scan won’t be happening at two. Don’t have a time yet, but it will be a little later. Sorry. That’s the way it goes. But hey, they might call back and say they want her at two after all.”
She left. We barely had time to adjust our sails to this change when she came back in.
“They called again. What did I tell you? They want her down there as soon as possible. I’m going to have to stick her for her blood sugar before she goes. Transport will be here shortly, so you need to get her changed into a hospital gown. No metal for the MRI.”
She seized Tarica’s hand. After a moment of shock, Tarica protested. This nurse was no Jaime. I decided I needed to use the bathroom before we left.
The finger stick was over when I came out, but Tarica, traumatized, was still crying. When I tried to take off her dress, she threw a fit royal. I am not likely to soon forget that scene, with transport waiting in the hall, the nurse hovering unhelpfully, Tarica fighting so hard it took Linford and me at full strength to jam her into a hospital gown.
Cassondra stayed behind while Linford accompanied Tarica and me down to the second floor. I pointed out familiar corners to him as we went, and when the stretcher was backed into a bay, I said, “This is the same bay we were in on Friday when she had that seizure cluster.”
Before too long, we were taken back to a little room where Tarica received the PET injection. She was supposed to rest quietly for about forty minutes before the scan. While we were waiting, Tarica’s doctor arrived for one last consultation.
We had few questions, most of them being answered, save for the biggest one. The doctor did most of the talking.
“We’ll let you know the results as soon as we have them. The tests will need to be reviewed by the different departments. I looked over the EEGs, but I’ll need to go over them several times. Every Monday, the epilepsy surgery team holds a conference to discuss the current cases, and we’ll go over everything as a group and come to a decision. It will probably take two to three weeks before someone contacts you.”
“Will we be told over the phone, or do we need to come in for an appointment?” I asked.
“The one who contacts you will likely give you a summary of the results, but you’ll need to come in to discuss it more thoroughly.”
The techs came to take Tarica in for her PET scan. I left with her. She was hungry and tired and sick of strangers, but she was transferred to the machine and hooked up anyway. And then we were being ushered out of the room and shown to the waiting room.
“She’ll be taken from the PET to the MRI,” the tech said. “It will probably take an hour and a half, maybe more.”
Rather than sitting for ninety minutes, we returned to Room EP4. I finished packing while Linford and Cassondra hauled the loot out to the van.
When the time was almost up, we returned to the waiting room. Apparently no one knew exactly where we were because someone finally called my cell phone to tell us she was finished and in recovery.
She may have been in recovery, but she wasn’t into recovering. After she had responded enough to be returned to her room, she curled up on her bed and refused to open her eyes, although she was conscious enough to snarl and punch me when I tried to work some of the tangles out of her hair. The EEG wires had been taken off for the MRI, and her head was finally free of its turban.
We tried to coax her awake. “Tarica, do you want to eat? Your tummy is very hungry. As soon as you get up and get dressed, we can go home. Don’t you want to go home?”
Snarl. Growl. Snap. She hid her face behind her arms and refused to come out.
They wouldn’t let us leave until she was fully conscious, and she wouldn’t cooperate enough to get dressed. I had been patient for so long, willing to stay with her no matter how long, but now that the end was within reach, I was nearly climbing the walls with my eagerness to go home.
Finally, she said she wanted a slushie. In our hurry, we had forgotten to get one down on floor two, where they are available for all patients in recovery. No slushie, but what about ice cream? There’s ice cream in the pantry.
Slushie. And she did not fully wake up until Linford went down to the cafeteria and got one.
Was she spoiled, or was she traumatized? I remembered my own experiences with sedation and voted for the latter. If she were spoiled, now was not the time to address it anyway. Plenty of time unspoil her later.
We got her dressed, finally. She had her slushie while we gathered the last few things together.
Linford carried Tarica while Cassondra and I shouldered the remaining bags.
And we left. With none of the fanfare I felt in my heart.
Four days early.
I remembered what the nurse said when I had asked her if they often do the PET and MRI back-to-back.
“Never,” she said. “At least, not that I heard of.”
The reason why it never happens is because the PET is done on the first day (that is, when the parents are informed and don’t give their child breakfast), and the MRI is done on the last day, when the electrodes can be taken off and kept off for discharge.
Hospitals are not known for their flexibility. Yet, a “never” procedure had just been done for us. It could be argued that if the PET had happened on the first day, it would have been better planned. But I felt that God had again taken what looked like a mistake and used it to remind us that He is in charge of the details and nothing—not even hospital procedure—is too hard for Him.
It could have happened to anyone. But when it happened to us, I looked for God in it.
And I found Him.
* * *
We are still waiting for the results. Tomorrow it will be two weeks since Tarica was discharged. Sometime in the next week (or two, allowing for the slowness of the medical world), we will learn whether or not she qualifies for brain surgery.
We are praying, praying, praying that the results will be clear—a definite yes or a definite no—and that our decision will be the only obvious choice to make. But if it is not, God will still be in it.
You may need to remind me I said that.