Friday, July 25, 2008

Amelia's Story - Part 2

If you're just arriving, you may want to skip down to the previous post, which is the beginning of the story.

When we arrived at Scottish Rite, Amelia was already in the ICU and the medics on the helicopter had given her some phenobarbital when she had a seizure on the way over. She was finally getting some restful sleep, and the on-call doctor had already been by and let us know that we'd be seeing a neurologist by the next morning. (Note that just being in that pediatric ICU was a humbling experience. In order to go to the restroom, you had to walk the length of the ICU. I looked around the first time I was heading that direction, and the phrase "there is always someone worse off than you are" must have went through my head a million times. In the waiting room was a family on their knees begging God to please heal their child. It was quite an experience and one I'll never forget. The next couple of times I had to walk through the ICU, I kept my eyes on the floor or straight ahead as some things were just too hard to see. It even comes to my mind today that somewhere there are families experiencing this very thing today, and I should always have them in my prayers.)

The neurologist met with us the next morning and informed us that he wanted to do some tests, but at first observation, he could not find anything wrong. She was doing so well and had not had any more seizures, so we were rather quickly moved to a regular room. He wanted to observe her for a couple of days and do an EEG to see if any seizure activity was showing up. The EEG was normal. They did a CT scan, and it was normal as well. By Tuesday, she still had not had another seizure, so he felt that everything was fine and that it was just a freak occurrence. He was going to let us go home the next day and was going to allow the phenobarbital to be tapered off, but just to make sure everything was covered, he wanted to do an MRI of her brain.

She was scheduled for the MRI the next morning, but it was later into the afternoon before it actually was accomplished. They didn't want her to eat anything before she went down for the MRI so I could feed her just before they performed the test and she'd sleep through it. She was getting so hungry, and finally some agitated nurses helped us get her in. The MRI was completed, and we went back up to the room expecting to go home soon.

In a very short period of time after we returned to her hospital room, the doctor and a nurse came in. I was rather confused as he had already said his good-byes. The rest of my family was downstairs with my other two girls eating supper, and Brad had gone into work that day and was coming back up as soon as he got off work to take us home. The doctor sat down in front of me and said he had some bad news. His first words were, "It's not a tumor." But he went on to say that the MRI was abnormal. Apparently, she had white matter in her brain that was parallel on each side - like a mirror image. He said this was characteristic of a metabolic disorder, and now we had to determine which one she had - as there are many. I had heard enough about metabolic disorders to know this really wasn't good news.

The next plan of action was to draw lots of blood, every eight hours or so for the next day or two, obtain urine samples, and do another spinal tap to obtain spinal fluid samples. All of these things would be needed to perform the many, many different tests that would be required to determine what type of metabolic disorder she had. By Thursday evening, all of these things were completed, and we were finally able to go home. Most of the tests took up to two to three months to obtain the results, so we had quite a wait ahead of us.

But, we didn't just sit around and wait. From the time she entered the ER at our local hospital, we immediately began calling people and asking them to pray for her. Every night as a family, we gathered around her and prayed for her. We taped scripture to her cradle that would be an encouragement to us as we waited and prayed for her to be healed. The few months before she was born, I completed a Beth Moore Bible study called "Believing God." What I learned during that time of study was a tremendous help throughout what we were going through. A phrase she had quoted in one of the chapters especially stuck with me. It said, "When you don't know what to believe God for, just believe Him to be Big." My biggest prayer during this time was for Him to please show Himself Big to us.

In the meantime, she was continued on the phenobarbital, and after a VCUG determined she had kidney reflux, she was placed on daily antibiotics. We followed up at the neurologist's office (He was a wonderful doctor from Colombia and I had a lot of respect for him. He was very kind and compassionate.), and he wanted to repeat the MRI in six weeks to see how much the white matter had progressed at that point. That would give us a clue about how serious her situation was.

We went back for the MRI around six weeks later and then went home and waited for the results. A few days later, someone contacted us and said that her MRI was normal! The white matter that had been seen on the first MRI was no longer there! Praise the Lord!!! Also, as all the tests returned, nothing abnormal was found on any of them!

We went back for another check-up with the doctor, and he said, "I can't explain it." (I was so overwhelmed at that time that I could hardly say anything, but I did send him a letter a few days later telling him how we "could" explain it.) Before beginning to taper her off the phenobarbital, he wanted to do another EEG just to be sure. A few days later, we had the EEG performed, and he called our home and said it was abnormal. I really didn't let that worry me as I knew God was answering our prayers in that situation. So, we repeated it a few weeks later, and just a few days before Christmas, we got a phone call saying that the repeat EEG was completely normal. What a wonderful Christmas present! I was thrilled to be able to begin tapering her off that medicine, and thanks be to God alone, she has never had another seizure.

As of today, she is still on the daily low-dose antibiotics to prevent UTIs and damage to her kidneys. She originally had the kidney reflux in both kidneys, but her last VCUG in October of 2007 revealed that one side had healed and the other was a grade 1. She'll go for her three-year checkup soon, and I'm sure they'll schedule her next VCUG soon after that. I'm praying that it will be healed also so she can drop the antibiotics.

In the meantime, on her past two birthdays, I have been strongly reminded about that time three years ago when we didn't know what was going to happen. I am so thankful that God chose to heal her. Not only that, it made me more thankful for all my children and how I should not take one day for granted. As a friend told me recently whose daughter is graduating from high school this year, "hold on to every moment." That is certainly what I want to do.

1 comment:

Anonymous said...

Hey Rhonda,
We rejoice with you over your sweet baby and your miracle. We have some of those too. God is so gracious to us. Happy belated Birthday Amelia!!!! tammyp