Preparing for Phase One of Brain Surgery

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.

22 thoughts on “Preparing for Phase One of Brain Surgery

  1. Stephanie, I remember well all the tests I was put through at the beginning of my breast cancer diagnosis. Some of the same ones little Tarica will go through. All I could do was trust in God. I was terrified at the thought of some of the tests, specifically the MRI. I’d had several over the yrs for other surgeries and knew what they were like-not my favorite activity! I had been awake much of the night praying, worrying. When I got to the hospital for the MRI the young lady attending me had me change into special clothing then asked me to sit in a specific chair. I thought she wanted to give me more instructions. But she asked if I knew my diagnosis. I told her yes, I knew it was breast cancer. She then explained that she knew, but wasn’t sure if I knew yet. Then she softly said to me,”Mrs. Smith, our God is not a God of statistics. He is a God of miracles.” I burst into tears, and she thought she had upset me. I assured her that on the contrary, she had just been used by God to reassure me that He was there, right by my side, and it was going to be ok. And it was. God is not a God of statistics Stephanie. He is a God of miracles.

  2. Our prayers are with you all! I am praying for a Tarica that is miraculously calm and ‘understanding’ of all that is taking place, and a Mom and Dad who are at deep peace in their spirits as only Christ can make us through these times! Again….prayers are with you!

  3. Stephanie,
    I’m still praying and will continue to do so. Just know that Tarica, you and your family and the doctors are being uplifted daily in prayer.
    Fondly,
    Ann

  4. I know the feeling of coping with cold medical things–too many, too complex–when all you care about is the person you love. I’ll be praying for you and Tarica.

    • You get it, Luci. Sometimes, though, it’s easier to focus on the cold medical facts instead of thinking about what the one you love must go through in order to secure a hoped-for cure. Because, oh, it breaks my heart to think of her coming fears and tears. Thanks for your prayers.

  5. Got Any Rivers

    “Be of good courage”, God spake unto Joshua,
    When o’er the river God pointed the way.
    Jordan uncrossable! things seemed impossible,
    Waters divide as they march and obey.

    Battles to win! they would meet with their obstacles,
    Jericho’s walls, too, must fall to the ground.
    God never failed; He stood back of His promises,
    Walls had to crumble as they march around.

    God is the same and His Word is dependable;
    He’ll make a way through the waters for you.
    Life’s situations by Him are amendable,
    Mountains and hills He will part for you, too.

    Got any rivers you think are uncrossable,
    Got any mountains you can’t tunnel through?
    God specializes in things thought impossible,
    He does the things others cannot do.

    this is a favorite song of mine… Praying for you and yours! God is able!

    • Thanks, Kay. So glad our God can do anything. But part of me acknowledges that although God can, sometimes He doesn’t. Either way, He gives grace enough.

      • Yes, you’re right. And that’s what puts the element of total surrender into this thing. Knowing that all power in Heaven and Earth is in His Hands, all you can do is trust that whatever He does will be the Absolute BEST for Tarica.

  6. Much courage to you Stephanie. We do what we have to, even when we feel completely helpless. You have a strong faith, and so I’m confident you will use it and God will see you through. Hospitals are just so tough on our mother hearts.

  7. All those tests are difficult for adults, can’t blame Tarica when she gets upset or frightened. I found when my children had to face any thing like that I told them what I knew to expect and assured them I was there as well as God. Stay strong lots of prayers are being said for Tarica and your family.

  8. I recently read this Scripture gem and was challenged by Asa’s trust in God and declaration of God’s power. I share it to encourage you, too.

    “And Asa cried unto the Lord his God, and said, Lord, it is nothing with thee to help, whether with many, or with them that have no power: help us, O Lord our God; for we rest on thee, and in thy name we go against this multitude. O Lord, thou art our God; let not man prevail against thee.

    • What a powerful verse, Karen, and an even more powerful God. This morning I have been feeling physically ill, a common reaction of mine to stress.

      “Help us, O Lord our God; for we rest on thee.” I needed this. Thank you.

  9. I have been a silent follower of your story, touched by your bravery, strength and trust in God. I hurt for Tarica, because I know the fears and discomfort of subjecting yourself to doctors, needles, and testing. She is a child, without the advantage I had of age and reasoning. I was not four, but in my twenties when I faced many of the tests you mentioned above. Yet I remember counting down the hours of my 48 hr video EEG, the itching scalp and making faces at the camera. Not very mature! =) I wish It were possible to visit with Tarica and identify with her, but please tell her she has a fan in me.
    I also know the power of a brave mom and supportive family. Being the advocate and just by always being there for her, you are providing so much more security than you realize. You are the one thing that doesn’t change. Hang in there!

    • Thank you, Andrea. Coming from you, this means a lot. You have your own story, and it hasn’t been an easy one to live.

      I think, if I have the connections straight, I just spent the weekend with your cousin. Bravery must run the family. 🙂 God bless you and those you love.

  10. Pingback: Phase One of Brain Surgery: Day 2, Part 1 | Stephanie J. Leinbach

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