Tuesday, November 13, 2012


Max has had a few of these tests done now.  I believe this was his third or fourth since he was a baby.  We took quite a few years in between his first test, and trying it again, as we weren't so confident that the results were accurate, given that it is a metabolic test of the eye, and we know that Max already has a metabolic disease which can cause damage to the retina.   

But, in the past year or so, we've started seeing another opthamologist at Children's, who is very level headed about the results of Max's ERG, rather than comparing to the "norm", he compares to Max's previous tests.  

Max has to do the ERG under anesthesia because he is quite the mover and shaker this one, and no way is he going to let contact lenses with electrodes attached to them stay on his eyeball for more than a second.  I doubt they could even ever get the lens on him without sedation. 

This means we get to spend the whole day at Children's for a 20-30 minute test.  We started the whole day with feeding Max overnight, so he didn't get behind on his fluids since he would be under anesthesia.  We fed him up until 3:00am, then switched over to clear fluids for the remainder of the early morning hours.  

We had to check him in at 9:15, and then up to surgery for a couple of hours of meeting with nurses, anesthesiologists, and doctors to sign consent before they put drops in Max's eyes to numb, and dilate them.  Max's pupils get crazy huge with dilation, and he definitely does not like the strange feeling of it all.  Luckily, they took him back pretty soon after they put the drops in.  

Our very blue-eyed boy turns into a very black-eyed boy.  

Soon enough, it was time for Steve and I to put on our fetching surgical clothes covers to take him back to the OR.  



Once back there, we helped get him on the table and I try not to look around too much...those operating rooms always make me feel a little faint...don't tell the doctors.  (And doctors reading, don't let that deter you from letting me come back.  I've yet to hit the floor with all of his surgeries and procedures.)

We helped hold his hand and give him kisses as he went to sleep, then we were off while they got down to business. 

If you want to see a rundown of what an ERG is, this video is actually quite informational. 
Max has to have ERG tests done about every 6 months for a couple of reasons.  One, he has a metabolic disease which can damage the retina.  Keeping tabs on how his retinas look help us know how his metabolic disease is, and if it's still in check.  Also, one of the seizure medications he takes can cause retinal damage.  Because it is still in the early stages of approval with the FDA, they require eye exams every 3 months, and recommend ERG's every 6 months.  We could opt out of the ERG testing for the medication trials, but it's okay for right now to get a good look at his eyes through this test. 

While Max was in the OR, Steve got us lunch, and I popped in for a visit to see our buddy Jacob in the PICU.   Jacob is going on his third week in the hospital, and is still very sick.  Max chose a special monster this weekend to give to him...a tummy monster.  Max knows all about having tummy troubles, and Jacob is really having a hard time with his tummy right now.  Maria, Jacob's mom, said it was Jacob's Poop Monster, and Max thought that was hilarious when I told him about it.  Boys and poop...so typical. 

Maria and I visited for a bit, and by the time I made it back to the 2nd floor an hour later, they were calling us back to help wake him up.  

Max wakes up one of two ways out of anesthesia after easy procedures...after surgery, he's always very clingy and usually having a seizure.  But, for these simple procedures, he's usually very angry, or thinks he can get up and walk out of there.  Yesterday, was a combination of both.  It took Steve and I, plus the nurse to keep him from hurting himself from all the kicking of his bed.  We were able to keep him pretty calm, as long as he knew we were right there with him the whole time. 

In recovery, we got one of his regular day surgery nurses, who knew us well enough to let us go home fairly quickly after he woke up.  

In all, we were there about 6 hours.  By the time we got home, Max was really awake, but his eyes were pretty sensitive to the light, so we got Batman to his Batcave for the night.  He didn't sleep very well last night, and his eyes have still been pretty dilated today.  I'm hoping by tomorrow he'll have his baby blues back and is feeling more like participating in school and therapy.  Since he didn't feel like doing either much at all today. 

Please keep our buddy Jacob in your thoughts and prayers.  He's one tough guy, and we're hoping he can make it home soon!

1 comment:

ferfischer said...

Boys and poop. You are very right about that!