Feb 15, 2008

Ethan - Part II

By the end of June Ethan began having seizures every other day. We were sent to new doctors who specialize in child neurology.

The first step was to have another EEG at the new hospital. The people were great. I guess they could tell from the looks on our faces that this was the scariest thing we have ever had to do. The technician told us that just as the EEG was done in the ER, they would hook Ethan to a machine that would record his seizures and determine where the seizures were coming from. They would also have to MAKE him have seizures and not wait for him to just have one, because they wanted to get a good reading. This was very hard for me and D because who wants to see your child having a seizure and how many would it take for them to get the information they needed?

The EEG was completed and they tried to compare it to the EEG that was done in the ER, but the software programs did not match, so we learned that our diagnosis would be totally based on the tests the new doctors did. They gave us the test scans and had us go to the new neurologist just around the corner from the hospital. We were so lost and "out of it" that we left our car in the hospital parking lot and walked to the doctor's office. As soon as we opened the door, I stopped in my tracks.

The waiting room was wonderfully decorated with child like paraphenalia, engaging colors on the wall and smiles that hugged you as you walked in the room, BUT I saw 2 babies in car seats. 2 babies .. I didn't know babies would be here. What a pill to swallow. I thought about what we had been through on our short journey and comparing it to these moms and their infants and said ... thank you Lord. Thank you that even though we don't know what is totally wrong at least he is not a baby having seizures and unable to explain what was going on. I said a silent prayer for those babies.

Our names were called and I went to the window and was given a mountain of paperwork to fill out before we could go back. Paperwork - - child having seizures - - parent who's world is spinning out of control --- and you want me to fill out 15 sheets of paper? Ooook. Ethan had some paperwork he needed to fill out as well. He had to color some sheets, write some sentences, and follow the dots and numbers to make a picture. Simple enought, but while he was coloring I noticed he was coloring outside the line. Something he does not do. When he wrote his sentences, his letters were really big.

I finished the paperwork, turned it in, gave them our insurance card and the $20.00 copay and then we were called to the back. They weighed Ethan and measured his height and ushered us into this very white room to wait for the neurologist. It seemed like an eternity. When Dr. Anthony finally came in he spoke to us and immediately said, Ethan, let me shake your hand. Ethan just sat there .. and finally gave him his hand. Dr. Anthony stands as tall and BigBird and has a voice that boomed all over the room. He has GREAT bedside manner. He had Ethan do some motor skills tests, asked him a lot of questions and then let him sit with us.

The next 30 minutes are a blur .. a real blur. What I remember is him saying that tests showed Ethan IS having seizures all the time. Some of them we will be able to see and some of them we will not. The good news is there is a LOT of medication to TRY on Ethan and see which medicine or medicine combination will work best for him. Medicine is not an exact science when it comes to children. Dr. Anthony said it appears that there is a mass that is causing the seizures, but we need to do more tests to determine what kind, how big it is and the location of the mass so we can make plans to take it out if possible. The rest of meeting as I said was and is a blur, but I know D asked a million questions and wrote a lot of information down. (Thank God for putting us together, I was too frazzled to think of much to say)Dr. Anthony gave us a seizure chart so we could record every seizure and log the dispensing of his meds and any unsual bahvior. He gave us 2 sheets for bloodwork to be done before Ethan started the meds and then another sheet to have bloodwork done before our next neurology visit. The meds Ethan took then and takes now can have a negative affect on his liver. Dr. Anthony gave us a new prescription for Ethan and said he would work on scheduling an MRI for Ethan as soon as possible.

The MRI did not happen until the latter part of July, little did we know, MY medical history was about to take a turn for the worse.

1 comment:

Jenn Jenn said...

Jai,

I am soo very proud you for sharing your life. Your desire to release and share is already changing lives and ministering to others in a very positive way. I am soo glad you are a part of my life.

Love you more than you know,

Jenn