Confused. That’s what my Rosie was last week. Incredibly confused.
In fact, on Thursday she strung together three completely unrelated sentences about things that she could care less about that had me scratching my head. I started to worry. She seemed to be a little more than just confused.
My worries were justified on Friday when she woke up and thought her phone was hacked. I took a peek and understood why she was concerned. None of the texts that she sent the day before made any sense at all. They were all jumbled up letters. In fact, at one point her boyfriend joked that she was texting like a drunk. I panicked, emailed our pediatrician and headed to the ER.
Here’s the thing about going to the emergency room when your teenager has no short-term memory, is complaining that they can’t see well and is confused. They immediately have to rule out anything psychiatric (even though I announced it wasn’t when we walked in the door) and drugs. And, you have to tell your story a number of times before people really believe you (in their defense, they have to. I’m sure they see a lot of kids in emotional distress and high). I was pretty certain that it was neurological and told them. Five hours later, they believed me and called for a consult. Rosie had a CT scan to make sure she didn’t have a head injury or worse and a lumbar puncture to rule out encephalitis. Then they admitted us.
There is nothing scarier than your child asking you, “Did my dress come?” twenty times because she doesn’t remember that she already asked. Or, telling you there’s a goat in the backyard (there wasn’t). Rosie’s short term memory was shot but all the long-term stuff was there. She could tell you that she was in the hospital but had no idea what day it was. She also had blurry vision. There’s not a lot in this world that scares me anymore, but this did.
The next day we got lucky. The neurologist that does Rosie’s Botox was the one on call. Scratching his head, he told us that all the tests came back normal so the only thing he thought it could be was a Confusional Migraine. He explained that they’re rare and happen primarily to kids. He suggested that we go ahead with her nerve blocks and Botox since we were late getting them (damn insurance) and she’d be fine. We weren’t able to get anything for pain relief because her kidney numbers were elevated. We were released that night.
All of us were a little shocked. Rosie had no migraine symptoms all week. While she has a headache 100% of the time, it never escalated to a migraine. She never asked for medication and didn’t seem like she was feeling bad. The only odd thing (besides the fact that she was incredibly confused) was unexplained vomiting earlier in the week. Looking back, she must have had a migraine (she had abdominal ones when she was younger), she just didn’t know and as the week went on it escalated. In the future, if she has vomiting with no flu-like symptoms, we’ll just go ahead and treat her for a full blown migraine.
Two days later, we were back in the ER, with Rosie in excruciating pain. It took me over four hours to convince the doctors that she had more than a lumbar puncture headache and that she needed to be treated for a migraine (the good news is her kidney numbers were normal so she could take some pain meds). Once the migraine was gone, she tried to stand up to go to the bathroom and the LP headache kicked back in. I told the resident, I wasn’t moving from the ER until I had some kind of plan. I wasn’t going to make another trip back and I knew that they could do a blood patch to stop the headache because my hubby’s had one before.
A neurologist came down and explained that they don’t do a blood patch on kids until a week after the lumbar puncture because it’s another procedure. He advised us to call neurology on Thursday to get it scheduled if she was still miserable and to have her lie completely flat for a few days to see if it would resolve. Interesting, because we were given no instructions at all upon discharge from the hospital regarding the LP. None.
So, we’re waiting. All day yesterday in bed, but she was able to eat and drink. Last night, she was up all night nauseous so we’ll see how today goes. I’m pissed off. It’s just another set back that we didn’t need. We have enough problems already. It’s one more week of school missed and another procedure that took forever to schedule delayed. It sucks.
Because we had a scheduled surgery this week, I caved this week and asked for some meals. I have no energy to cook and half the time, we’re standing in the kitchen after a long day at the hospital wondering what to eat. Take out is expensive and honestly, my dad is no help (and he’s pissed when there’s nothing to eat around 6:30). Thanks to all my friends for pitching in and helping out. It’s been a blessing. Also, thanks to everyone who’s signed up to continue to help through Meal Train. I’m a proud person but you know what? It will be nice to have a little help in the upcoming weeks so I can focus on getting my business back on track and take care of my teen.
I’ve been thinking about publishing an EBook with all my chronic illness posts. While I never set out (or wanted to) write about illness, I’ve discovered over the past year that I have a lot of wisdom to share with other parents that are trying to navigate the confusing world of doctors, hospitals and school with a sick kid. There’s a lot out there around cancer and type 1 diabetes, but not so much on illnesses that go undiagnosed. I just need to get motivated; which is also another problem. As time goes on, my motivation seems to slide. I need to get it back.