Another Ian Update 1/11/24

Would anyone like to join me to just scream? Scream into the world without having anyone to judge you for it? Just scream, and let it all out?

I am so unbelievably drained from all we have had to fight for. We have had to fight for Ian in ways I didn’t have to before. I had put so much trust into others that they would do their job and would do the right thing for Ian. My trust is now slightly broken, and I’ve realized that it’s truly us who have to be Ian’s voice.

Before Ian was diagnosed with the brain tumors, I knew something was off for months. MONTHS. Before someone listened to us. We weren’t taken seriously because Ian’s only symptom at the time was being overly tired. Because he was between 1 and 2 years old at the time, it got chalked up that he’s still a baby. He’s still growing. And it was something he would outgrow. But it wasn’t that at all. Even a baby whose growing doesn’t fall asleep in the middle of a water park AFTER taking a 2-hour nap.

What it actually ended up being was seizures. Seizures caused by the tumors. But because they weren’t convulsive seizures, it took me so long to catch it. And by the time I did, he was getting worse because he hadn’t been treated, again, for MONTHS. Once we finally had someone listen to us, we finally saw neurology. And by some divine timing, Ian had his first convulsive seizure in front of the neurologist- the exact person we needed to see what we were seeing because this is their specialty.

Afterwards, we had 4 years of going through the motions. No one made us feel unheard of after the inital diagnosis, and I even understood it a little bit why we were dismissed.

But these past few months have tested us. The only thing I want is for Ian to have a fair chance at life. That requires extra help from so many different people. And what do we do when those expectations aren’t met?

To start, my last post I mentioned that Ian had to be admitted for breakthrough seizures. We have been trying to tell neurology since October that we were noticing Ian having starring spells. They scheduled him for a 40-minute EEG, but this didn’t catch anything. Still, based on our account of what was happening and the videos we captured of Ian during these episodes, it was highly suspicious that it was a seizure. Meds were adjusted- one medication increased in dosage, while the other decreased in dosage (because this one is a controlled substance typically used for anxiety, but it also can be used for seizures, but it can’t be used long-term and we agreed, it’s about time to come off). Ian was also scheduled for a 72-hour EEG, but we couldn’t get this until March.

The episodes continued. So, in early December, I asked if it would be possible to get that EEG appointment moved up sooner so that we could definitively say if what we were seeing were even seizures. The doctor had brought up to us that Ian is on a lot of medications, and maybe they were interacting, and that could also explain the episodes we were seeing. So, before he adjusted anything further, he wanted this 72-hour EEG to hopefully capture the episode. Instead, they wanted us to do a second 40 minute one. I didn’t think this would show us anything, especially because Ian is most likely to have an episode right after he wakes up or right before bed. Not to mention, we already did a 40-minute one just a few weeks prior, and it didn’t show anything. Hence, the 72-hour one. But before I could really protest further and demand something more be done, Ian ended up in the hospital the day after Christmas.

Flashforward to earlier this week, we were noticing Ian still continuing to have episodes. We contacted Neurology, and on Monday night, we were instructed to once again, bring Ian down to the emergency room.

They redid all the bloodwork, scans, and another EEG. Instead of a 2-hour EEG, this time, we did 12-hours. The bloodwork and the scans all came back okay- no signs of another bleed or tumor growth. And this time, the EEG finally caught the episodes we have been seeing and confirmed that Ian has been having a lot of mini seizures that are happening in clusters and lasting only a few seconds each. Once again, meds have been adjusted, and we’re hoping he’ll be back to being seizure free in a few days. As of right now, he’s still experiencing seizures, but the doctors said it could take about a week for the medicine to be fully in his system.

I can’t help but think that both of the hospital stays could have been avoided if they had just listened to me back in early December. If someone heard our concerns and took them more seriously. Hospital admissions are hard for Ian. Heck, it’s hard on any kid. If we can avoid them, why wouldn’t we?

And in the midst of that fight for Ian’s health, we’ve also had to unfortunately fight for his education as well. Ian has a had nurse attend school with him since he returned after the tumor hemorrhaged last year. This current school year, our previous nurse took on a different job, and we were given a new nurse. Or should I say multiple new nurses. Because starting on the second day of school, we have experienced multiple call-offs from the nurses. And when this would happen, Ian “wasn’t allowed” to go to school. Now, I use quotations because legally, that’s not allowed. But understanding that Ian needs a one on one, and didn’t have one, we agreed to keep him home to keep him safe. However, we had to continue to push and push for a solution. As of the time I write this, Ian has missed 29 days of school. And 16 and 1/2 of those, were STRICTLY because there wasn’t a nurse. The rest were for appointments or him being sick. Obviously, he misses enough school on his own accord, but to miss additional days because of staffing issues was unacceptable. If I had kept Ian home just because I felt like it for those amount of days, I would have been called in front of the magistrate. Ian has had no routine, and the only thing consistent in our life has been inconsistency. Unions and superintendents got involved, heck, our doctors even got involved. And now FINALLY, Ian has a new nurse from a new agency starting tomorrow, and we feel really hopeful about her. (We got to meet her to make sure we felt it would be a good fit, so fingers crossed out intuition is right!) But why did it have to come to all that to get to this place? This whole time I thought everyone was on our side, but I now feel like Ian is not being seen as a person. He’s being seen as a liability. No one wanted to help him. They opted for him to stay home instead of helping us fight for what he needs, deserves, and has a right to. Maybe I shouldn’t say no one, there were very select few who did try and fight for us, but nonetheless, I am tired of fighting. But I’ll keep fighting for Ian.

I hope this is now the light at the end of the tunnel. I hope things start to fall into place. I hope things just get easier for my little warrior. He deserves it.