Wednesday morning I got to the hospital in time for the doctor's morning rounds. When I got there, before the doctors arrived, Michaela was awake and talking. She had rediscovered the rubber duckies that the EEG techs gave her (2 in each hand, mind you!), and was very alert. Overall, she looked awesome, and when I looked at the EEG, it looked really good too.
But I was curious to see what her night had been like. Typically, Michaela can have a great EEG during the day, but as soon as she falls asleep, it gets messy. Sometimes the messiness is just the everyday seizures she deals with, and sometimes it's more problematic. I wanted to make sure that we weren't looking at her being so good during the day, when something bad was sneaking up on us during the night. Because it's happened before. Like....what happened this past weekend when we were discharged too soon.
So Dr. Head Honcho (the neurology department chief--not to be confused with our "Chief") came through after a little while, and was so elated that she was awake (the first time he'd seen her not sleeping), that he was just beaming. He confirmed that the EEG had looked awesome during the day, but I wasn't satisfied with that. I told him that I needed to know how it went at night in order to feel as comfortable as he was feeling. He said that was fine, and that he and Chief would look over it as soon as it was uploaded and they could scan through it.
In the meantime, he felt like we had dodged the bullet we were facing on Monday. He decided to move her BACK to the Cube. They put her back on regular food as well (she was only getting g-tube formula). Overall, we were heading in the right direction.
****
But I'll be honest with you....I'm on high alert.
Actually, Chief says I'm on worse than high alert, he calls it "Lava Alert." I'm just really sensitive to every little thing she's doing that might mean she's rejecting the drug. It's not that I'm fussing about "everything," just the signs that I know are typical of rejection. See, when you've been on THE BEST DRUG for a kid with LGS, and you're stuck with using drugs that just aren't supposed to work as well (because "the best drug" made her psycho), you just can't help but be wary. Couple that with the fact that she crashed just.last.weekend and you've got me on Lava Alert.
Of course, I'm keeping it in perspective. I know I'm not in this alone, and I'm not like, overly upset about her condition, good or bad. Really, I keep looking for the bigger picture that God gives me a glimpse of from time to time. All things work for the good, right? Well, so what if I have to walk through a valley in order to get to the mountaintop? At least I have God to walk with me. There's no better Trail Guide.
But as a parent, ESPECIALLY as a parent of a child that cannot speak for herself, I take the role I have as her advocate very seriously. EXTREMELY seriously. I think of it as a highly specialized job, that only I can do. When she isn't well, I get really focused; really driven. I analyze everything. EVERYTHING. I know about all the meds, the doses, the times, the doctors, the potential therapies, the various outcomes. It does not stress me out to handle it all. In fact, it stresses me out to NOT know what's going on.
Chief knows this, and that's why we work well together. I need plans. I need information. I need to feel like part of the team. He's cool with that.
Her life is not in my control, but I will do the best job I can with the control I've been given.
The control I've been trusted with.
So if I feel something is off.....you better believe I'm gonna pay attention. High alert, Lava Alert....call it what you want. I just think I'm doing my job.
****
I tell you all that to tell you this: I'm seeing Red Flags.
Now, we are in unchartered territory with Boo. She keeps throwing curveballs, she keeps the doctors guessing, and she's on drugs she's never been on.
This COULD be good.
Or it could be bad.
Of course I'm praying for the good, but I've been through bad, and I'm ok if we still have to deal with bad. And in all honesty, I'm praying to KNOW when it's good, as opposed to when it's just "sorta good." I don't want to go home, just so she can crash again.
And the red flags could be nothing, ok? Totally nothing. But in case they're not, I'll just keep my guard up so we can catch the problem before it gets really bad.
Or they send me home too early.
****
Back to the nighttime EEG...
Chief came into the Unit about 11am to get me so we could go review the EEG together. Over the years, he's taught me some different patterns and squiggles to look for. I'm no where near an expert, but I can look at them and see various things. He's considered one of the better teachers for the medical students here at Children's, and I know why. He likes to show me how it works. And I love to learn.
So today, we looked at her EEG from last night, the one from Monday (the "very bad one"), and the EEGs from last week (when she was psycho girl).
It was pretty obvious how much BETTER it was last night and yesterday compared to Monday. Amazingly so! Considering how BAD Monday's looked, and just in 1.5 days it was much clearer? It was phenomenal. It wasn't seizure free, mind you, but for Michaela it was very much "normal."
Wow.
Chief was relieved, and said that if it stays that way through Friday, then he thinks we can safely go home. He's going to keep her on continuous EEG monitoring (something we DIDN'T do last weekend--and it backfired on us) so we can see if she starts to slip out of the good pattern.
This is a comfort to me.
That way, even if the red flags bother me, I can at least be assured that the EEG is ok. Sometimes red flags are just a side effect of new drugs. Sometimes, she's just being a kid. But no matter what, we will SEE whether those flags need attention. Last weekend, I had to go strictly by gut, and trying to convince a new doctor that your gut thinks something is wrong, is very stressful.
But this plan feels good. Stress is minimal :)
****
In other news, the coordinator for epilepsy surgery came up to meet me today. There are 3 specialized neurologists here at Children's that are in charge of surgery, called "Epileptologists." I've met one before, the other 2 are new. What happens, is Chief still micro-manages her overall care, but the epileptologists are directly involved with anything leading to surgery. In particular, the tests we still need to do.
So Alyson is the coordinator for that. She schedules everything, and is the direct patient touch-point for all questions and technicalities once a patient has been referred for surgery. She came with her card and told me to call or email whenever I want, or have a question (poor girl, she has NO CLUE what I will do with that kind of privilege!). She then gave me a card with a schedule for the first round of tests.
Ummmmm.....the FIRST round? We've already done that!
I proceeded to inform her that the Epileptologist (for future reference, "Dr. E") she had paired us with, has already consulted on the first round of tests, and told Chief to go forward with the next step....which he did. Alyson seemed pretty confused. I went on to tell her about the MRI we got at the beginning of Oct, and how it was specifically done within Dr. E's recommendations.
She started to argue with me some more, when Chief walked in.
Good timing!
See, I respect Alyson's position in the department, and what she needs to accomplish, but I was NOT willing to go back and redo two rounds of tests JUST because she was out of the loop. She was so on autopilot, that she couldn't immediately handle that she hadn't been included in the original game plan. She just kept going with her normal Standard Operating Procedure...no matter what I said (and I knew my stuff, ok?).
But Chief took over and said he would clear everything up. He wasn't sure which test Dr. E would want to do next: the SPECT Chief thought we'd do, or the PET, another test in the series. He said he would talk to Dr. E, and then Alyson would get back to me.
She called later, and will come see us tomorrow morning. Praying that the next test (whatever it is) is done soon, and that we get further down the 4-6 month timeline. Just being in Dr. E's rotation, is an exciting development for us!
And proceeding with this surgery option, would be SOOO worth the hospital admission.
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