Much Needed Answers

On Monday morning, we got up early so that we were ready to go if we had any chance to get her into the neurologist early. I called the office right at 8:00am only to find out that they did not have any pediatric neurosurgeons or neurologists in on Mondays, but the scheduler said that she would have the Physician’s Assistant look at the CT scan and call me if she could provide insight.

She called me an hour or so later and told me that she sees enlarged ventricles which have produced extra fluid around the brain.

Fluid.

The original theory by the pediatrician and the thing the ER doctors said wasn’t there.

Remember that we went to the ER because she wasn’t eating well that day and because the pediatrician suspected fluid.

When the doctor came back with the ct scan results we specifically asked if it showed fluid. She said no. She kept saying “brain abnormalities” and we respected her honesty about not being a neurological expert. But we left freaked out.

The PA said that we would obviously learn more tomorrow, but that we shouldn’t be too worried at this point because it seems like it will be easily treated.

We felt relieved, angry, worried that they were wrong, annoyed that we have been so freaked out that our baby was going to be permanently affected, and yet hopeful that she is going to be just fine, all at once.

We didn’t post about it yesterday because it wasn’t conclusive and it wasn’t the neurologist who told us that information. We didn’t want to give false information only to retract it. We apologize for not saying anything but we thought it was best.

Our pediatrician personally called us to get an update and was so relieved to hear what the PA said. I had called earlier in the morning to let them know about the “brain abnormalities” comment so he was concerned enough to call us himself. He said he hopes they will treat it ASAP because that is what is best for Tori.

That brings us up to today.

The neurologist said that there is extra fluid in and around the brain and that the ventricles are enlarged. He said that this normally doesn’t affect development so he thinks something else may be going on.

He worked his magic and got us an MRI appointment for tomorrow at 3:00pm. He was prepared to admit us to the hospital so that they would have to do the MRI overnight. But they managed to rush it.

The doctor said he would try to read the MRI and get back to us by tomorrow evening.

So we wait again, and we still don’t have complete answers, but we have progress.

Update: they just called and moved the MRI up to 10am tomorrow.
Thank you all for your prayers! Please keep praying.

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6 thoughts on “Much Needed Answers

  1. After I had a cardiac procedure a couple of years ago, the doctors came back later that day and said the abnormalities were still there in my EKG. Not good. Would I have to have the procedure again? And would it make any difference? The next morning, the nurse asked how I was doing, I said “I’ve been better,” and explained my predicament. The nurse said “oh, I thought I heard something about an error with your EKG.” Later that same morning, the cardiologist with a team of interns came in to apologize for a “miscommunication,” they’d read an EKG from BEFORE the procedure, not afterward. No one said someone made a mistake, it was a “miscommunication.” Praying the results of the MRI turn out to be a “miscommunication.”

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  2. I sent out a request to my prayer warriors at 2:30 for you. I’ll be at it again in the morning, along with myself. I have walked down a similar path of normal/abnormal test results, this matters/this doesn’t matter, slew of information given to us from different doctors about my daughter’s cancer. It is so frustrating and scary. This is your child’s life you’re talking about. To some, it’s like it’s a piece of paper or scan only, not your child and your emotions. After we went through the anger towards the one particular doctor that utterly and blatantly missed my daughter’s cancer, I prayed for her. Prayed that no one would go thru that again, and that our daughter was just a fluke in her profession. You guys sound so strong, and seem to have your facts straight and everything together. That is one of the best things for Tori from a medical standpoint. I pray you get quick answers tomorrow and treatment plan so you can get her back to your smiling, normal little girl. Hold strong.

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  3. Hello there! I got wind of your Blog from some folks at First Southern Baptist Church in Williamsport, Pa (where I am a member).
    We have a son with Spina Bifida and in turn Hydrocephalus (enlarged ventricals / fluid on the brain) and are seen at Hershey for many things. You are in GREAT hands to start with! What you are describing seems very similar to that part of Rikky’s situation and thankfully it is easily fixed with a “VP Shunt”.
    God Bless you all and please let me know if I can be of any type of support. 🙂

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