Ian Update 12/29/23
Our Christmas break didn’t quite go as planned. I’ve said this once and I’ll say it again: what in life ever does though?
Christmas Day came and went. And the day after Christmas started off like any other day. Ian woke up, I got him and helped him down the stairs. He ate breakfast, and then we cuddled up on the couch and watched one of his favorite shows while I sipped on my coffee.
And then, all of a sudden, it wasn’t like any other day.
Ian all of a sudden got very tired and seemed like he was going to go to sleep around 9 AM. While out of character for him, we did have a packed day the day before. Maybe we pushed it. Maybe being that much off his schedule was too much for him. I decided to clean the house a little while he laid down, checking on him every few minutes. But while checking on him and trying to talk to him, I noticed he was very slow to respond to me. And while he seemed completely exhausted, he wasn’t sleeping. I took him to the bathroom and sat him on the toilet. I checked for a fever, and honestly just hoped the little walk to the bathroom would wake him up more to respond to me the way he normally does. I decided I would change his pull up while we were in there, but I had to leave the bathroom to grab one real quick. My house is small, and it would take me less than 10 steps to get to where his pull ups are, and I was able to see him the whole time I was out of the bathroom. I’m halfway there when Ian just falls straight forward. He didn’t get hurt, it scared him, but he was otherwise physically okay. As I try to get him to walk back to the living room, he suddenly can’t walk as well as he normally does. While Ian does have balance issues from his brain injury, we know his baseline. And he was not at his baseline. Due to Ian’s history of brain tumors, one tumor hemorrhaging, hydrocephalus, and seizures, we felt he was acting enough out of it to take him to the emergency room.
Although there were people who got there before us, I’m thankful the ER staff recognized how dire the situation could have been if it was another brain bleed. While there isn’t necessarily an increased risk for the prime reason that it happened once before, any symptom that could indicate that it is happening again, will warrant concern for us and Ian’s medical team. Ian immediately got his vitals done, and they immediately took us back.
They decided to first check for another brain bleed. Since this would be something that would need immediate action taken. Ian was taken for a CT scan, but unfortunately, it didn’t rule the brain bleed out or in. The scan showed that the tumor that hemorrhaged was showing up as high density, which means it was brighter on the CT scan than other spots. It was also brighter compared to his last CT scan done the previous year after his surgery to get it resected. It could mean one of two things: it could just mean there was mineralization present, which basically is just calcium build up. This can happen over time because the tumor is no longer able to regulate the calcium coming in and out of it, causing build up and the high-density appearance on the scan. However, a brain bleed could not be ruled out, because we can’t actually see what is on the tumor. While nothing else would suggest it was a brain bleed, and they felt it probably was just calcium build up, it’s not something we want to risk. So, an MRI was ordered next to get a little bit of a clearer picture. An EEG was also ordered to check for any seizure activity.
Both of these things happened in the evening/nighttime. Ian was at that point transferred to the pediatric ICU to be looked after, in case there would be some kind of an emergency. I felt my heart start beating rapidly as we made our way through the familiar halls. The same halls we walked every day for nearly a month just a year before.
When it was time for Ian’s MRI, due to needing to be absolutely still to get the best pictures, he needed to be put under sedation to ensure he wouldn’t move his head. This is normal- we get sedation every 3 months with our routine scans. The difference though is that I never see him intubated for those. We take him back to help with the gas mask process to put him to sleep, but then we leave. And we don’t see him until the tube is out and he is in the recovery room. The only other time I’ve seen Ian intubated was last year for the brain bleed. And since we are now on the same exact floor it once happened on, trying to figure out if we are here for the same exact reason, I immediately started crying. It became too much. And when it was time to take the tube out, they asked us, if we were okay with it, to talk to Ian while they did so to help keep him calm. I couldn’t do it, and Mike had to take over. But hearing Ian call out for me once it was out, made my heart just melt in a little puddle.
We didn’t get the results of everything until morning. The MRI showed Ian’s ventricles have been increasing in size since last year. So while there wasn’t any noticeable growth from the previous MRI in October, if you compared the most recent to the one from last year, that’s where neurosurgery says they are seeing the difference. This would normally indicate pressure on the brain, but they said there’s no other evidence of this. Ian wasn’t throwing up, which is a major sign of brain pressure, they said his brain itself didn’t appear to be swelling, it was just the ventricles. They also had ophthalmology check his eye pressure 3 different times. (Pressure on the optic nerve can be a sign of pressure in the brain.) But this also came back fine. Neurosurgery decided to have us follow up with our surgeon after our routine MRI, which is scheduled for the end of January, just to double check everything.
With all of that, oncology also saw us. They stated that while the tumor did take up more dye contrast than in the previous scan, the size of the tumor itself was unchanged. There’s not always a known reason for these kinds of enhancements on images, but because the tumor is the same size, Ian is considered to be stable.
The EEG also did not pick up any seizure activity during the time Ian was hooked up. However, despite this and because of being able to rule out the other things mentioned above, it was decided that Ian most likley just had what is known as breakthrough seizures. This means that even though Ian is on seizure medication, they did not protect him enough in this instance.
I don’t want to get into the details of things that didn’t go quite as planned with this hospital visit, but we were there for 3 very long days. Granted, this is much better than a 3 month stay. It can be easy to get frustrated, especially in those situations, but we tried to remember to be calm, kind, and patient throughout everything. We are very grateful for a lot of things, and it’s important to remember those things in the midst of all the things that seem to be going wrong.
When all is said and done, we came home on some adjusted seizure medications, and Ian has been much more himself. We are still slightly off schedule today, but we’re hoping once we get back into our routine and back on our regular medicine scheduled, Ian will be able to adjust just fine.
It was interesting to see how many staff members came in to talk to us and see how we were doing. A lot of them commenting that they know this is hard, and that they are here if we need anything. I’m sure they did that last year as well, but it didn’t have the same weight that it did this time, when I’m more able to think clearly. I kind of chuckled and told them this is nothing compared to what we went through last year. While of course being in the hospital is scary, knowing how close we were to losing Ian last year was what made it scary. This time around was still mentally exhausting, though, and I intend to fill my cup back up over the New Year weekend.
We are just grateful to be home, and grateful it wasn’t something much worse.