I have been meaning to write about Ethan's eye since he had the second MRI ten days ago, and I am finally getting a chance to sit down at the computer. Fortunately, there was nothing big on the MRI that called for an emergency, but unfortunately, there is still not a certain cause for his eye problems.
On November 3, Ethan went back in for a second MRI, this time specifically to image the third cranial nerve with high-def images. Overall, it went well. Some things were worse, but some things were better than the first time. Again, Ethan was so brave and so good about the whole ordeal. The highlight of his visit (which he was already looking forward to since remembering the last time) was the treasure chest that he got to pick a prize out of after they put in his IV. Remember last time he picked a green frisbee? He had already told me before arriving the he was going to pick a blue frisbee this time. I was just hoping there would be something of the sort in the treasure box again. :) Lucky for him, there was one lone frisbee left--a sparkly pink one! He was thrilled! And that is exactly what he chose. So he played a little frisbee with Daddy until it was time to go back for his scan. He was also excited about having green dinosaurs on his bandage this time instead of blue cars like last time.
(Ethan's eye looks pretty bad in this picture. It doesn't always look like this, but you can get an idea of what is happening. It's always worse when he's tired.)
The sedation didn't go so well this time. We were a little unhappy with how it all played out. When we first talked to the nurse practitioner (who prescribes the drugs for the sedation), she asked how the first sedation went and if we wanted to use the same drug. We, being only as knowledgeable as our experience has allowed, having NO medical or pharmaseudical training, used common sense--last time it worked, he came out of it okay, and despite the twitching legs, it went really well, so let's stick with the same one. She told us we could try another one, but wasn't very convincing that it was commonly used or 100% safe, so why would we do that? So they did what we said and used the same drugs they used last time to sedate Ethan (Precedex, Verset), only this time it didn't work so well.
First, Ethan didn't go to sleep as easily. Last time they had him sit on the stretcher that would take him through the scanner while they hooked up his IV with the medicine. As he started to get drowsy, he just laid down and went right to sleep. This time they had me hold him while they hooked up his IV, and I had to hold him until he was asleep. He fought that so hard. As he started to get drowsy, he kicked and screamed and tried to get down. It was no fun. Eventually he gave in and went to sleep, and then they took him from my arms and carried him into the scanner room, when there laid him on the stretcher. That was awful. I did not like handing over my sleeping child who had just been so uncomfortable. Another factor may have been that it was 6:30 in the morning, and he'd had nothing to eat since the night before, and last time it was nap time. We decided an MRI first thing in the morning is not great for a 2 year old.
Second, Ethan woke up during the MRI. AWFUL. Jake and I were sitting quietly next to the empty bed where they would eventually bring Ethan to wake up, when we heard a screaming child. And we knew it was Ethan. After listening to his crying for a minute I walked toward the tech room where I could see the tech on the video screen in with Ethan, trying to calm him and get him back to sleep. That was heart-wrenching. Jake made me come back and sit down again, so I listened and heard quiet, and then crying and quiet. Eventually I heard the nurse practitioner say "this child cannot have any more drugs!" Ugh. Not something you want to hear. In the end, they were able to get Ethan sedated again to finish the scan, after giving him extra doses and an extra drug, ketamine. The nurse practitioner came in to tell us that we should have chose the other drug and that next time he's sedated we need to use Nembutal. (Hopefully there is not a next time.) Seriously? She made us feel like it was our fault. How on earth were we supposed to know? If she thought we should have used the other one in the first place, why didn't she tell us that? We know nothing about that! Anyway, she wasn't our favorite person that day. :)
But there were some nice things about this MRI that we really liked. Once they brought Ethan back to us, they let him sleep until he woke up, which was quite a long time since he'd just been given another dose before they were done with the scan. They said his legs twitched the whole time again, but this time when he woke up he didn't kick and scream and cry like the last time. He woke up really well and calm and loved eating his posicles, crackers and juice. That was a really nice change from the first MRI.
The other thing that was good about this time was that while we were waiting for Ethan to wake up, the radiologist took us into his office and showed us the MRI images he had just been carefully reviewing. He had also been the radiologist to review the first on and he had talked with the doctor. He showed us all the images, explained what they were, and told us what he thought about them. We really appreciated those immediate results.
So, after talking with the radiologist, the results show nothing big or obvious that is wrong with the third nerve. There was only one spot that the radiologist thought could be a possible difference in comparing the right and left nerve, but it was a very small difference, and something he didn't even want to say for sure. Unfortunately this spot is in the hardest spot to image and the hardest spot to operate, according to the radiologist because of all the other "things" and blood and...in that spot. I can't remember the name, but it's right behind the eyes, in between them. Anyway, the good news was that there was nothing blaring that he was concerned about.
I was able to talk with the doctor later that day to follow up and she decided she didn't want to do any more testing at this point, but would like to see Ethan in two months. So we have an appointment to see her in January.
It's good to know there's not an emergency at this point. But the weird thing is that it is still getting worse. His left eye has a hard time even looking straight ahead now. And he rubs it a lot. Today it seemed to really be bothering him--lots of rubbing and closing the one eye. But he never actually complains about it. And if you ask him if his eye hurts, he always says no. So there must be something that is causing slowing growing palsy, but it is still a mystery to the doctors. We will just keep praying and see what they decide come January. Until then, we will enjoy the holidays away from the MRI scanners. :)
If you chance to acquire a large appliance box, don't throw it away. It will provide hours, days, and even weeks of entertainment! This box started out as a dishwasher box, and then became a lion's cage, by just putting it on top of the boys and "feeding the lions" by handing snacks down with a ladle through the top hole. Then we decided to cut a door, and a couple windows and it became a house. Eventually we added another door, transforming into a tunnel, where it remains. But the fun didn't end there. The boys colored on it, added stickers, colored some more and had hours of fun with this large piece of cardboard. I only wish we'd thought to keep the oven box when we got a new oven back in March, but that was on the day Owen was born, so I guess we were a little preoccupied with other things. (We have almost exhausted all the appliances in this apartment...only the fridge is left! Luckily we have an awesome landlord.)
