Another trip to the IWK has come and gone. We were a little worried that we had to leave on Wednesday during the snow storm, but surprisingly the highway was clear! The drive went well, and of course, we had to make a beeline for Boneheads upon our arrival. I gave Emmett his snack and meds and then we dined on pulled pork, brisket, chicken wings, corn bread, mac and cheese, sweet potato chips and garden salad! Yeah. We ate way too much. While we ate Emmett fell asleep and I plopped him into his play yard. Which he apparently doesn’t want to sleep in anymore. He woke up about an hour after he fell asleep and started shouting. And kept shouting every 20 or so minutes while still half asleep. I got him out of there around midnight and he fell asleep on me right away and was happy as a clam. I think he just needed his mama. So we shared a bed and he tried to push me out of the bed all night. I was on the very edge of the bed while his limbs were sprawled out all over me. Needless to say I didn’t get any sleep that night but couldn’t help but laugh when he’d put his hand on my face and leave it there.
The next morning I got Emmett up at 7am to take his meds. He could only have them with water, nothing else. He needed to be fasting from midnight on for the MRI. We were told to register him for his MRI at 9am and the MRI itself was supposed to be at 10am. We got there right at 9am and registered and then headed to the MRI waiting area. A technician came out to tell us they had just gotten a call to do an emergency MRI that had to be done before Emmett. We filled out some paperwork in the meantime and about 20 minutes later they wheeled a sweet little baby girl past us. She was so tiny and looked so fragile with all the tubes connected to her. My heart ached for her and her parents. When her parents came back out the mother was crying and I just wanted to give her a hug. That’s one of the toughest parts about going to the IWK and being in the pediatric wards so often. You see things that you’re not prepared to see. Every time we go to the IWK or the hospital, there is always a child and their family that stands out to me. I end up always wondering how they’re doing and if their little one is OK. Those images will likely be with me forever. I hope she will be ok.
Emmett got in for his MRI at 11am. He was way over due his morning nap and was totally passed out. The lack of sleep the night before and an empty belly didn’t help things, either. We met with, who I think was, the radiologist? And she was kind of rude. She saw he had an MRI in 2011 and asked, “Why is he getting another one.” Er… because his neurologists ordered it. She was very snippy and acted almost like he shouldn’t have the MRI. I told her that his seizures are always changing and now that he’s older they can get a clearer picture of his brain to see if there have been any changes. After she left the room she must have given the ‘ok’ and we had to wake him up to give him chloral hydrate, a sedative that has a very strong metallic taste. He absolutely hated it when he had to have it for his MRI in 2011 and it was no different this time around. He coughed and his poor little eyes teared all up. We told them that when he had it last time it completely knocked him out for the entire day and he even slept through that entire night. They ended up giving him a smaller dose than he had when he was 8 months old. After he was fast asleep Ryan brought him into the MRI room and laid him on the table. Since I’m pregnant I couldn’t go in with him. I watched through the window and then the tears came. I honestly thought I was going to be ok this time around but the tears came out of no where. Just seeing Emmett lying on the table in that big machine made me think about everything he’s been through. And I started to feel angry and thought, “This isn’t what he should be doing right now. It’s not fair.” Ryan came out to a weepy wife and then we headed down to grab some lunch while the MRI was being done. I had a pretty tasteless piece of pizza while “Big Girls Don’t Cry” played in the cafeteria. Um, sorry Fergie. But they do.
The MRI took about 45 minutes and he was in recovery at about noon. He was really out of it again. And he was also 30 minutes past his lunch time and that was worrying me. He had to skip breakfast and hadn’t eaten anything since 7:30 the night before and I didn’t want him skipping lunch and becoming too ketotic. One of the interns helped us wake him up enough (cold washcloths on his back and tummy!) to get 3 ounces of his ketocal into him. It wasn’t his full portion size but it was better than nothing. We then booked it up to the 8th floor to meet with the neurologist. We got there right at our appointment time at 12:30 and met up with her before we registered. She told us she was behind with her patients so she’d see us soon. I think it was just a little after 1pm when we saw her. We also got to see the neurologist dietician that worked with us in November when we started Emmett on the diet. Since they were running behind in MRI and the neuro was running behind, she wasn’t able to look at Emmett’s results. She said she’d call us Thursday or Friday but we still haven’t heard. We updated them on how he’s been doing since starting the diet. They were happy that his seizures were better and that he was down a med. We talked about his development and how we still don’t know why he’s so behind. It could be the infantile spasms, it could be something else. Who knows. I also asked if surgery would ever be an option. And let me tell you, I thought I was going to throw up when I asked that. It’s something that completely terrifies me but I’ve come to realize that it could happen down the road. She said depending on if the seizures start in the same area it’s a definite possibility. As far as we know, his seizures start in the right occipital lobe and then start to branch out. She said the branching out didn’t matter, just as long as they started in the same area all the time. That area is also the visual processing center, so there would be (more) vision loss. We have no idea what he can or can’t see at this point. But if the surgery would be successful, having his seizures controlled would really benefit his development. If this ever becomes a reality he would have to have a lot more EEGs to make absolutely sure his seizures are all coming from the same spot. I really, really hope he never has to have brain surgery. But, I won’t think about that right now. We’ll see what tomorrow brings.
After that appointment we headed back to the hotel. Emmett was still sleeping so I snuggled up to him on the bed and napped with him for about an hour. He woke up easily when I woke up and finally had a decent amount of his ketocal. He STILL wants nothing to do with eating food, though.
Also, before I wrap this up, March 26th is Purple Day! AKA, the global day of epilepsy awareness. While we were at the IWK waiting for the doctor, we added Ememtt’s name to the purple links that were hung up in the office. Wear purple on Tuesday, yo!