CT Scan Scares and Prayers
On the day of her accident she had a CT scan. The ER doctor came back into the room and told us her CT scan was abnormal. He then rattled off that she had a darkened basal ganglia and that he had to inform us that her CT was abnormal and we'd have to follow up with her pediatrician. He said it so fast that I was completely unsure what he had said. I had him repeat it a few times and then had him spell it while I texted it to my husband. I then asked him if it could be dark due to a shadow casted by my daughter's palate expander on the roof of her mouth. He said no. I asked what causes a dark basal ganglia he said, "Well it could be biology, she was just born with it like that, or it could be a neurological condition that would show up later on." He asked questions about tremors or seizures. Then he said it could be an error in the CT scan, but we couldn't know that unless we did multiple CT scans to see if it was always dark. Before he left the room he looked at my daughter and then back at me and said, "If she starts developing any neurological symptoms like tremors, seizures you need to have her get an MRI." I was kind of thrown off guard. I told myself it's nothing. My mother in law was with me and reiterated not to worry that it was probably nothing.
I went home and researched darkened basal ganglia on CT scans. It wasn't good. Parkinson's disease and Fahr's Syndrome were the first things that popped up. Then a list of other neurological disorders, all of which were not good. I felt worry creeping in. Please God, don't let it be any of these. Let it just be an error or a shadow or just the way she was made, but nothing serious.
That week I contacted her orthodontist to tell him about her concussion and that we wouldn't be turning her palate expander while her brain was healing. I mentioned what the ER doctor had said. This orthodontist is a very scientific man. He did research on Macaque Monkeys and is very knowledgeable on the brain, face and jaw. He said he had a hard time buying that there was a problem with her basal ganglia, because she has no tremors or strange gait or speech issues. He said he was pretty sure it was a non-issue. I felt better.
The following week we went in for a follow up with her pediatrician. Going in I was curious what she would say, and expected that she would think it was a non issue too. She told me that she had gotten the CT report and she was a bit alarmed as she's never seen a CT report like this before. She had spent the week trying to get the actual CT scan to look at herself, and had been unsuccessful. She explained that a darker basal ganglia could be an indicator of something that would develop later in life and that there is a thing called childhood onset Parkinson's. She said that she wanted to do some research. She was going to get the scan and send it to her contact of a pediatric radiologist and neurologist to take a look. "Perhaps the person who read it was reading it based off of an adult baseline. I want to double check. If they say no worries we can leave it alone, but if they say there is a need for an MRI then that's our next step." Okay I thought. I hoped that they would say, no worries and we would be done.
Friday the nurse called, she wanted me to know that our doctor had spoken with the radiologist and that it was important to do an MRI. When I got off the phone I went to tell my husband but I couldn't get the words out of my mouth. I just started crying. I had been clinging to the thought that they would say no need for MRI probably nothing. Hearing that they wanted further testing sent my mind into over drive of all the what if's. I just cried and cried as I shared with him what was said. The nurse again told me that it could be something that develops later that would be good to catch early. My little girl's future went before my mind. Fears crept in.
I then had to talk to the nurse again, as we can't do an MRI with the expander in, it's metal. So we came to the conclusion that it will take place in July or August when the expander comes off. They said "It will be okay to wait until then, that's not too far off and it's not something that will rapidly change or progress." While that gave me a little hope that we wouldn't have to do the MRI immediately, it didn't clear out the fears, as everything that was a possibility were things that develop later...
My heart and mind have run in circles. I pray for safety, I pray for health, I pray against addictions, I pray all kinds of things for my children...and when I look closely I realize that I'm basically praying for a lack of trials, smooth sailing, perfection. Yet, I know in my heart that all my trials, all my loses are the very things that have grown my relationship with Christ. "Count it pure joy to face trails of many kinds because you know the testing of your faith produces perseverance." James 1:2 So what should I pray in this situation God?
I desire my daughter to grow into an adult and be able to live out her dreams, to marry and have children. To watch them grow. To live a long and healthy life. When I read, "a dark basal ganglia can be a calcification and should be considered normal in elderly but pathological in those under 40, resulting in disease" my heart quickens and my stomach knots. I don't wish a disease on my child. I don't want her to deal with seizures and tremors and loss of motor skills. It scares me.
I also want her to have a close relationship with Jesus and trust him and believe in him and grow in her faith. I don't want her stagnant... What is this God, I question? What's going on? Is it going to be nothing and we are all going to rejoice and glorify you in that? Will the waiting and wondering be the test or trial in itself? Is it going to be something? Another trial? Really?
In the same week my mother in law received a diagnosis of small fiber neuropathy. Is it related I wondered? Is it genetic? Does it effect the basal ganglia too?
Tonight my daughter let me know she is worried about all this. She's heard the doctors, she's over heard me and she's worried that whatever "this" is, it's going to ruin her future. My heart ached as she told me that. She said, "Mom do you hope it's nothing or do you believe it's nothing, cause that's two different things." I looked at her and didn't know how to respond. I said, "I hope and pray it's nothing." She turned over in her bed and put her back to me. I guess that was not what she wanted to hear. She seemed to be trying not to cry. I told her all I knew to tell her. "Honey we don't know what's wrong. It could be nothing, it could be a shadow or it could be an indicator of something. If it's something, maybe God is letting us know early so we can prevent it better. What I do know, is that you weren't supposed to be born according to doctors, and you are here. Then they said, you were going to come super early and maybe die, and you didn't. You were then supposed to be born so preterm that you'd need a ventilator and many surgeries, but they were wrong again. You were born early but needed no assistance. God's favor is on you and has been since you were conceived, so no matter what doctors say, God can say something different." Then we prayed and she was able to fall asleep.
My prayer is that in all this, I remember that God's favor is on her. That we can recount all our blessings. I want to remember she has defied the odds over and over. I pray that God will help keep my mind in check and that I won't run away with the what if's and the fears of what could be. I pray that the MRI shows it's nothing. Please pray with me.
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