A Rollercoaster Week for Daegan and His Parents

I got into bed last night and told Jason that I felt like Daegan's MRI, which was Monday, was a month ago.  My last post gave a brief synopsis on what Daegan has been feeling, but here is a summary of our week:

We were scheduled for the MRI on Monday but couldn't get in to see a neurologist for six weeks.  We went at 3:30 and everything went fairly smoothly.  Daegan did great.  It is a long, tedious process of pictures.  He was still and didn't have to be sedated.  After the first set of pictures, they gave him the shot/IV of contrast and did the second set of pictures to have to compare.  The first arm/vein didn't work out for the nurse (keep in mind he had to lay still so his head was in the same position as first set of pictures), so she had to go to his other arm.

As we were leaving, I asked what the procedure was to find out how it was.  She said the doctor had already called, so she would call him back and let him know that the film was being sent to the tech lab right then.  At that point, I was hopeful to get the results Monday night.  We waited and waited.  Daegan would pop up every once in awhile, "Any word?"  Bless his heart.

Then Tuesday morning.  I tried to be patient.  I don't want to be "that parent".  I waited until 11:00 and then left a message with Dr. May that I was just curious when we would hear b/c we were all anxiously awaiting.  Around 2:00, we finally got a call.  "Daegan has a lesion on his brain.  It is in the center of his brain so it cannot be biopsied or test.  It could be the cause of an auto-immune disease or could be a scar from something in the past.  We'd have to meet with the neurologist for more information."  Because of these results, the neuro wanted to meet with us the following at 12:30.  A lesion.  On his brain.  That was all I had.  No real information.

Thankfully, it was raining that day and Jason was home.  We delivered the news to Daegan together, being honest with him that we really had no idea what this meant, but we hoped for more answers on Wednesday.

It was the longest 22 hours of my life.  I tried hard not to let too much get worked up in my own brain.  I didn't search the internet, I knew that was a bad idea.  Dr. May was the ped we saw that ordered the MRI, but Dr E is our regular ped and he called me that night.  He was a little more reassuring that a lesion could very well be absolutely nothing.  He gave me his cell number and asked me to call him directly as soon as we left the neuro office.

So, Wednesday we went to the pediatric neurologist.  We thought we were seeing the head of the group, but he ended up in surgery.  So, we saw a partner.  We liked her fine and she did a very detailed work-up of history and then a detailed work-up of the past five weeks.  We tried to give her as much information as possible.  She felt that because all the motor skills were good, and because he was having a better balance day (we have him rank his days from 1-10, usually he is a 6 or an 8 and that day he was 4.5), we informed her she was not seeing him on a regular, bad day, she just didn't feel the lesion was anything to worry about.  Because of the way it was described by the tech, she felt it was something old, probably from when he had a concussion at age 4.  Unfortunately, there is no real way to know without testing it again in six months and seeing if it grew?

The neuro was going to meet with the entire group of pediatric neurologists and discuss the case.  They were going to come up with a list of labs to run and see if anything popped up that could be causing the dizziness or if anything popped up that could point to an auto-immune disease.  They called the next afternoon around 2:00 to say the lab list was decided and we were at the hospital by 3:00.  There were so many labs the lab tech thought it was a joke or a mistake.  After understanding it was not a mistake, she was able to draw enough blood for most of the labs - the rest would be done on Monday.

And now we wait and see if they find anything.  If not, I do not know where we go from there.  More labs?  Second opinion on the MRI?  Wait out this Ataxia (word used for this form of dizziness) and see if it clears on its own as many do?  Curse a little in between?

And, of course, PRAY!

Daegan has been good and frustrated and ok and ready to be better.  He can't read because his mind won't concentrate and that really, really is upsetting to me.  But we are trusting the Lord to guide us through this roller coaster and bring us steadiness.  No pun intended - ok, maybe there was...