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Journal

May
25
2021

So today was a rough one...

THIS KID SCARED THE HELL OUT OF ME TODAY. I’ll start by saying he is fine, everything is okay. Today was an incredibly intense and emotional day for this mama. Early on in the day I got a call telling me Landon would need to come in on the weekend for a COVID test since they won’t be treating on Friday for the holiday weekend (they usually test every Tuesday and Friday while sedated). As much as that sucks the worst part is that I found out since they won’t treat this Friday or Monday that he will be done on the 11th instead of the 9th like we had thought. I immediately burst into tears in the waiting room. I know it’s only two days, and it will be fine, but in that moment it was just another punch. We want to go home!! Then the scary part of the day. Landon was prescribed a new med for anxiety and I picked it up from the pharmacy and gave him his first dose in between appointments. Not long after he said he felt funny. Then he said his eye went blurry and he couldn’t see. He also started acting a little “off”. I was getting concerned so I started asking him questions about what he felt etc. His pupils were super dialated. I decided to take him to his regular clinic to get checked out. On the way there and as we waited he became increasingly loopy and was acting super confused about things. He was having trouble forming sentences and remembering words. When they finally brought us back he was acting confused about what the nurses were doing to him... normal stuff he does on the daily, like blood pressure. They took vitals, checked him out, called the prescribing physician and ended up telling us he was ok but to let them know if the symptoms didn’t resolve. They okayed us for sedation and we went back down. He was acting more and more loopy and confused as we went on. He acted like he was seeing and hearing things that weren’t there. Then we got him in the bed and hooked up to the monitors like always and his heart rate was really high. The nurse is obviously concerned and calls for a doctor to come. I start looking at the paperwork that came with his new med and realize one of the rare and super dangerous/potentially fatal possible complications of it is serotonin syndrome... which among the signs listed are confusion, hallucinations, high heart rate, dialated pupils. I show the nurse and start completely panicking (but trying not to let landon see). The dr is taking a while and the nurse realizes I’m freaking out and calls for the dr to hurry up. Dr isn’t concerned that that it isn’t serotonin syndrome because he said that would look much more serious, but he’s still concerned about the symptoms and high heart rate so he says we probably shouldn’t sedate him today and should monitor him for a while. So that would mean no treatment today. As soon as Landon heard they weren’t going to do his radiation because of his side effects his behavior changed in an instant. Like a light switch. 🤔 He was upset that they weren’t going to do treatment. (For some bizarre reason he LIKES to go to radiation. The nurses have said most kids end up liking it 🤷🏼‍♀️) He started saying “ I feel fine now, we can still do it” but the dr is still not comfortable moving forward because of all the weird symptoms he had been experiencing. After we sat around being monitored for a while he finally admitted to me and the nurse that HE FAKED MOST OF THOSE SYMPTOMS. He really did have some blurry vision and felt “super tired” after taking it.... but the rest of the symptoms he faked. And he’s a damn good actor. After a bunch of back and forth they agreed to move forward with his treatment but he would have to be the last patient of the day. His original sedation appointment was for 1:45 and by the time he was actually sedated it was almost 7:00. He’s been NPO all day so neither of us have had anything to eat. We finally left the hospital at 8:30. Oh, and did I mention this is my first week here all by myself?! One of the shitty “extras” of childhood cancer is that every single thing becomes 10x scarier than it used to be. My chest hurts from all of the anxiety today and I feel like I just ran a couple marathons. Landon feels terrible for causing so much trouble and for scaring me so much and promises to always be honest about symptoms from now on. We learned a real good lesson today.
 
Oh and for the heart rate... still not sure why that happened but they think dehydration because it came down after a couple bags of fluids.

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Comments

  • Amy Netemeyer : Sending love and hugs! ❤️❤️❤️❤️
    5/25/21