Monthly Archives: February 2015

A Brief Update

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We are entering day six of our hospital stay. Tarica is sleeping as I write this, and I hope she stays asleep for a long time. She has a PET scan at 3:30 this afternoon and won’t be able to eat or drink until sometime after that. The more hours she sleeps through her fast, the easier it will be.

Behind us are five days of weariness and wonder. Although we hit a few bumps in the road, God has been clearly directing our course. Our prayers, your prayers have been heard and answered. It gives me goosebumps just thinking about it.  I can’t wait to tell you all about it.

But it’s a long story, still to be fully lived and written—and of course, I want to tell it properly, without spoiling all the surprises now. Here at the hospital, I barely have five uninterrupted minutes to think, much less write. Although Tarica is doing very well, she is still only five and needs almost constant attention and supervision. This quiet time in the morning is my only break, if I can wake up enough to enjoy it.

God has been so good to us. Thank you for your prayers.

I’ll be back with the beginning of the story sometime soon.

Throwing Like a Girl

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At this time tomorrow, Tarica and I will be setting up house inside the walls of Children’s Hospital of Pittsburgh.

I feel as taut as a piano wire.

Last night, I read and reread that familiar verse, trying to saturate myself in its truth: “Casting all your care upon him, for he careth for you.” (1 Peter 5:7)

Throw all your anxiety on the Lord, Stephanie.

I’m trying, I’m trying, but it keeps falling short of its goal.

Stress has always robbed me of my sleep and my appetite. But I actually slept last night—except for a brief, wakeful watch in the hour of three—and that is a minor miracle. Now I just have to get through breakfast, lunch, and supper.

Tarica is looking forward to her hospital stay, but I suspect that has something to do with the air of Christmas around here. Such a sneaking around with mysterious parcels and boxes she isn’t allowed to open and packages arriving in the mail. It’s enough to drive any little girl into spasms of curiosity.

But she doesn’t have enough spasms otherwise.

My husband is an appliance repairman. He has lost count of the times he has gone out to a customer with a clunking washer or leaking dishwasher that runs beautifully while he, the repairman, is there. And haven’t you done this, too? You finally set up that doctor appointment, but the symptoms eased or disappeared shortly before you got there.

Despite having her medication cut in half, Tarica isn’t seizing enough, and tomorrow she is to be hospitalized to study her seizures.

It’s embarrassing to admit how much this worries me. What if she doesn’t seize enough for the doctors to locate the seizure focus?

A month ago, I would have been wild with joy to be in these shoes. Now, I am just sick with worry. A lot of time and inconvenience and prayer has been invested in these ten days at Children’s. A lot of money will be, too.

And what if she doesn’t seize?

(Okay, maybe a miracle did happen, maybe the seizures are gone, her epilepsy healed—I’m not discounting this as a possibility. But the not knowing eats at me.)

I’m trying to throw my worries on the Lord, but I have a terrible arm. I crave your help.

Pray for us.

Pray that Tarica would seize enough to give the doctors the needed information. Pray that her mind and spirit would be calm even if her brain isn’t.

Pray for Linford and me, that we would be strong and that our faith would not waver. Pray that I will be able to eat and sleep.

Pray for safe travels as Linford drives back and forth between his divided family.

Pray for the doctors, that they would have wisdom and discernment.

Pray a blessing on those sacrificing to help us.

Pray as the Lord leads you.

Pray His will be done.

Pray.

Family Photo Closeup

Several postscripts:

The photo above was taken this past weekend by a talented friend, bless her heart. She did a fabulous job with limited resources and time. (Jenica is seven; Tarica is five; Micah is twenty months. Dad and Mom are not as young as they used to be.)

I don’t know if I’ll be able to post updates while at the hospital. It all depends on… everything. Sometimes it’s difficult to write of an event while in the middle of it. Also, if Tarica goes ballistic, I’ll need to concentrate on her.

And thank you for praying. It’s not from lack of prayers that I feel anxious; it is my own weakness.

Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest. (Joshua 1:9)

Preparing for Phase One of Brain Surgery

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What is involved in Phase One of brain surgery?

I don’t know all the details, not like I will in a few days. But I have been doing some reading and research on Phase One so I can look intelligent when doctors start slinging around words and acronyms like isotope and PET and magnetoencephalography. With all this information backing up in my brain, I need to sort through it by writing out what I currently know.

If I keep the technical simple, perhaps you will not mind if I share it with you.

First, a word of explanation: Our daughter will be entering Phase One of brain surgery this week, but this doesn’t mean she is going for surgery. Only one-third of all patients who enter Phase One qualify for Phase Two, which is the surgery itself.

The hospital sent us a packet of information on the tests Tarica will likely face during her stay. This shed more light on what to expect, although the information was general, not specific to her case.

Here is what we know:

Video EEG

During her stay, Tarica will be continuously monitored on Video EEG, except when she is undergoing other testing or needing a bathroom break. This means she will have 26 button-shaped electrodes glued to her scalp, which are attached to a box which is in turn hooked up to a machine. She will be confined to her room, specifically the bed and chair.

A parent is required to be with the patient at all times. Whenever Tarica has a seizure, I am to push a button to alert the monitoring staff and to create a marker on the test recording for review purposes.

MRI

She will have at least one MRI, a test which takes picture-like images of the brain at different angles. Because the patient is required to lie still for a long time, Tarica will likely be sedated for this test, which of course means all kinds of lovely food and water restrictions.

PET

The PET scan observes the metabolism of brain cells. A radioactive substance (“completely safe and will not harm your child”) containing glucose is injected through an IV. Tarica will need to rest quietly for 30-90 minutes, until the substance reaches her brain. Once in her brain, the glucose in the substance binds with the brain cells. The PET scanner, a large doughnut-like machine, can now read brain cell activity because it is lit up with this clingy radioactive stuff.

Seizures create areas of intense activity, so no doubt it would be helpful if Tarica would have a seizure during this test. Is that too much, too strange to pray for?

SPECT

SPECT imaging detects changes in blood flow within the brain. During a seizure, blood flow is highest at the point where the seizure originates.

This test is taken twice, once when there has been no seizure activity for some time. The second test is taken after a seizure occurred. A radioactive substance (“safe and will not harm your child”) is injected during a seizure, and when the test is taken a few hours later, it reveals the blood flow in the brain at the time of injection.

I don’t understand how the test can be taken several hours later and be accurate, but I’m sure they know what they are doing.

MEG

I don’t know if a MEG study will be done this time. We were given information on it, so it’s possible, but the MEG imaging machine is located at a different hospital.

A MEG test uses sensors to form an image of magnetic fields within the brain. For once, no radioactive substances are involved. It reads the brain in ways similar to EEG. Electrodes are attached to the scalp, and then the patient is strapped down and slid into a machine. Unlike other tests, no one can be in the room during this scan, which takes about an hour.

I’m not seeing this test as doable for Tarica unless they sedate her. Between her claustrophobia and her fear of being alone with (and inside) a big machine—there’s little chance she’ll accept it quietly.

Other tests

There are other tests, not all of them happening on this stay. A language evaluation will be done while Tarica is on video EEG. This test takes several hours and may require more than one session. A psychiatry evaluation will be completed during this stay, which is largely to determine the emotional stability and coping abilities of the patient, and to discuss fears and concerns (both hers and ours) about what may lie ahead.

A neuro-psychology evaluation will assess Tarica’s developmental, memory, cognitive, language, and attention abilities. This test is not done during this stay, according to the information I have.

Last week, I received a call from a nurse at Children’s, the first of several, she said. The specifics begin. Starting today, I am cutting Tarica’s medication doses approximately in half. This is ensure that she is seizing frequently by the time she is admitted.

It’s a recognized fact that patients who are seizing regularly will sometimes stop seizing upon admission to a hospital. I could spend a lot of time worrying about this possibility, but I’m trying to trust God with those details.

I’m trying to trust God with a lot of details, but there are some details—like the packing and preparing—that belong to me. The next few days will be busy.

Not that I haven’t had help. I have been astounded by generosity over and over again recently, but that’s another story.

Thank you for allowing me to write this. I think I shall be able to remember now what a PET scan does and that there are two SPECT tests.

Sometimes the biggest preparations are the mental ones.