The hospital stay is over. The only good thing that happened while we were there is that we got to sleep in air conditioning. Other than that, it was terrible.
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Bug and I check in on Monday morning. I am not sure exactly where to go, and we are maybe running a few minutes behind. I go in the main entrance to the registration/information desk and am beaten to the desk by some 40-ish woman in head-to-toe Lululemon who takes 10 minutes (maybe a slight exaggeration) to ask and chit-chat about where the bathroom is while I seethe behind her with armfuls of our shit.
I am told to go to the building next door, so we haul our way next door. The woman at this desk is not all that much more helpful. She tells me our room number. That's it. I'm all, "So… are they going to meet us in there? Or? How about you tell me something useful?" Then she offers me a wagon for our stuff and I may have snapped at her that I had already carried it this far, so I didn't need one THANK YOU VERY MUCH.
We get upstairs and check in at the first station on the other side of the windowless, buzz-in only door, and then are shown to our room. First impression of our day nurse once we are there: not fantastic.
Bug flips her shit when they start prepping her for the electrodes. I have this much (imagine me holding my fingers together so they're almost touching; no, imagine they ARE TOUCHING) patience for freak outs about things that do not hurt at all. There are four adults standing around staring at us as I sit on the bed with her and try and talk her off the ledge about why the cold q-tip (cold because it has rubbing alcohol on it) is not going to kill her.
I always feel like such an ass when strangers watch me battle wills with her. I hate bribing her in front of other people, too. Eventually we are able to subdue her and we don't even have to wrap her up straight-jacket style.
She is FREAKING OUT here.
They get all her goo in, and we start… doing nothing. At first it is nice. I read my book. She plays her iPad. She has unlimited movies/iPad/Wii time while we are here (but still, God Forbid she partake in any single activity for longer than 30 minutes).
All wrapped up holding her bribe of M&M minis, now able to see again, itching to open the iPad.
And I'll see you in an hour.
Matt comes by after work with additional supplies that I couldn't haul myself the first time around. Before he arrives I spend a lot of time staring at this screen.
They play games. A friend brings us dinner.
We survive our first trip to the bathroom with the backpack on (she is not allowed to leave the room at all):
Then the doctor (the neurologist reading her EEG while we are there) comes by to say hello. I will call him Olaf, since he reminds me so much of that damn snowman. We exchange pleasantries and discuss what we are here to observe (her staring spells). He asks me the most bizarre question after I tell him who her ophthalmologist is: "Do you think he is attractive? Everyone seems to think Dr. G. is just such a dreamboat." I have no idea how to answer this. Matt looks at me, I look at Olaf, I look back at Matt, and I stumble something out about how I don't think he's a dreamboat, per se, but that I could see how his confidence and intelligence would be attractive, and how I think he is every Jewish mother's dream. It is clear I have said too much. We talk about our timeline for the week, and he confirms our suspicions that we will probably be there the entire 72 hours.
After he leaves, Matt leaves again to pick up some more things, and I start staring at the couch in the room. Our night nurse is even LESS impressive than the day one. I ask her if the couch unfolds and she responds that she doesn't know, and that this is only her third week here. Awesome.
Turns out the couch does not unfold.
Then the machine starts malfunctioning. Remember that photo of the computer screen? That's the real-time read out of her EEG. All the lines are flat.
The EEG tech is called. They try and fix it. It works for a short time and stops again. The tech comes back with a new cord, and says, "This should fix the problem." I believe him because I'm an idiot.
An hour later it stops working again. It's now after 8:30 PM, and all the techs have gone home. There is apparently NO ONE left in the building (I find this so hard to believe) who can troubleshoot this. I am losing my mind because, you know, this is the entire reason why we are here. If the machine isn't going to work, we might as well go home. It is down for AT LEAST an hour before someone is called in to try and fix it. I don't think it's missed anything significant, but what if it has??
I'm on edge.
Terrible Night Nurse comes to do Bug's vitals before we go to bed, and to stick on monitor electrodes (more freaking out about the stickers on her tummy, the light that measures oxygen sat… the list goes on and on). She has to ask the charge nurse how to work the monitor (I mean, really). I end up sleeping ("sleeping") in the hospital bed with Bug while Matt takes over the couch.
Tuesday morning I get up to go for a short run. When I get back, the shift has changed and we have a different day nurse than the previous day. She is gymnast-sized (although probably in her 40s) and the first thing Bug says to her is, "Why are you so short?"
Because my work is stupid and ignored my time-off request, I have to go in for a four-hour shift. Right before I leave two EEG techs come by to futz with her machine again. If Bug had been in distress or sick or if Matt wouldn't have been able to be in the room (and literally, if he couldn't have been in the room, because they required a legal adult to be in there with her at all times) I would have called out sick in an instant. I go in. I text Matt the entire time, ready to bolt at the first sign of anything awry. He tells me they finally changed out the box in her backpack, which in my mind could have easily been done when it started malfunctioning the previous day. Either way it seems to be a fix that holds.
I stop at home after work to change clothes and grab a few more things before heading back to the hospital. Matt has told me she is asleep (and that she was so tired she actually put down the Nintendo controller and asked to go to sleep and then just passed out - not like her at all), but that the doctor is coming back within the hour. I frantically throw shit from the house into bags so I don't miss him.
When I get back to the room she is just waking up. I give her a kiss and instantly say, "she has a fever." AWESOME.
The nurse comes and takes her temperature and it's crazy. Like over 102 from under her arm, which requires you to add anywhere from half to an entire degree to equal under the tongue (the most accurate). GAH. She does not handle fever well, at all.
Then Olaf arrives again. Apparently he had been in earlier that day, right after I left for work. Matt had started filling me in on some details right after I got back, but purposefully had not told me anything while I was at work. So Olaf starts explaining things about what he saw on her EEG overnight. It's not normal. What he saw doesn't make any sense to him. There is one specific, rare type of seizure disorder (we will call it B, for Barfs) that causes the pattern that she's making, but it is always accompanied by 1-2 hours of uncontrolled vomiting. Has she ever done this, he asks? No, we tell him. She has never woken up in the middle of the night to do that.
He says that's good, but it also means he has no idea what it is then. "If I showed her EEG to my residents, without any other information, and asked them what it meant, they would all tell me it was B. And then if I told them, 'But it is not B!' they would cock their heads to the side, and then each of them would have several different ideas after that, all different, all speculation."
Wonderful.
So we have no idea.
It is abnormal.
But she's not having seizures. So far. Good?
Matt and I know there is probably no hope now for SURE that we will go home early.
He thinks that an MRI would be prudent. I say that it was already on our list, but we can move it up. I want to have it done NOW, while we are here, and because I am, you know, having several simultaneous internal panic attacks. We are told that we cannot have it now, that insurance will not authorize an inpatient MRI while we are already inpatient for something else (why do insurance companies do this kind of shit?). But clearly it is not an emergency to have one otherwise, you know, she would have had one (like when we were in the PICU and it was all TEST TEST TEST TEST).
He asks us again if she has had normal EEGs in the past. I tell him that we were always told they were normal, and that I can get him hard copies of the reports from home, which he says he would like to see. The normal previous EEG results confuse him further because this, in theory, would have shown up before. I ask about EEGs changing as we age, and he says yes, they look different, but hers is not normal for a typical 4 year old.
I say that her previous MRI was normal, but it was at 3 months old. Would one now look a lot different? He explains that when you're an infant, none of the insulation (myelin) has formed over all your brain's connections. So it would look different because her brain would now be myelinated, etc. I ask about any structural issues - if there was a fundamental issue with it, would that be the same? He says yes, if she had an issue in-utero, in theory that wouldn't have changed between scans, blah blah blah my brain may have stopped listening at this point because it was consumed with WTF WHY CAN WE NOT HAVE THE SCAN NOW.
BUT if there was any silver lining, it is this: since Bug gets so disastrous when she fevers, neuro has always asked us when we go to the ER (because we always end up at the ER, because she always fevers in the 103-104 range and stops walking and holding herself up) to call the on-call so she could have blood work done.
We explain this to Olaf, so he calls her regular neurologist and puts in some orders. They come as quickly as they can (within 30 minutes?). The phlebotomist is amazing. Hooray! We dose her with some Motrin (but only 1tsp. WTF hospital?? That's less than even what I would give her at home, and you always dose more!) and wait.
No one has made any effort to determine the source of her fever. We are not offered a pediatrician or a hospitalist or ANYTHING. Since she is not complaining of any other symptoms, I let it slide, hoping it passes.
She bounces back after the Motrin:
Her neurologist stops by the room a few minutes later to take a look at her, but by now she's already had the Motrin and has regained some of her strength and coordination. We talk to her for a bit, and she's just as miffed as Olaf. Not that I expect her to have vast encyclopedic knowledge on rare one-offs, but JUST ONCE I'd like for someone to say, "Oh. It's this." The EEG result has, it seems, made her re-think our previous course of action. She is now less convinced that Bug has something dopamine-related, although she has not ruled it out completely. I ask about the genetic testing again (which we still cannot get the insurance company to cover), and if we should involve genetics again, as we haven't seen them in a few years. She is noncommittal in her answer. Internally I agree to give her a week or so to research (I hate the look on her face when she mentions how much she will have to do, mainly because it makes me nervous how much we have gone back to square one) and get back to us.
We thank her for stopping by and I resume scowling out the window.
Hi, outside world.
But night nurse #2 is wonderful. So sweet, so nice, so COMPETENT.
We dose Bug again before bed. Nurse asks me if I want her to come and wake Bug up in six hours for more. I tell her no, but Nurse says she will watch the monitor and may come in if her heart rate gets too high (due to fever). I can live with that.
This time I sleep opposite of Bug in the bed after she has fallen asleep, and it is MUCH more comfortable. There is enough room so my feet are nowhere near her face, and she's small enough that I have the entire lower half of the bed to myself.
Somehow Bug agreed to wear the O2 saturation band on her finger to bed. If she moved into an awkward position though, the monitor would start to beep, because her levels would drop off. Every time it beeps I wake up and stare at it, waiting for the numbers to climb back up. A few times I get all the way out of bed (otherwise the monitor is in view from the bed) to look at the EEG computer. It is going nuts, and repeating what happened the previous night. I feel like I can never be calm while she sleeps ever again.
Nurse comes in an hour or so after that. Bug's heart rate has skyrocketed. Her fever is now 102.5 (under the arm). More Motrin. More paranoid staring at the EEG screen.
I keep staring at the clock, willing the nighttime to be over. Why is it taking so long? How is it only 12:45? Surely it's closer to 4? Nighttime is the worst time to be scared and nervous. I sleep off and on, sort of.
The next morning I leave to go get us coffee, and to get Bug some of those vanilla scones from Starbucks, which are her favorite. She has refused food for the last 12+ hours and I want her to eat SOMETHING. She is very excited about the scones.
I decide I don't want to go running because I can't afford to miss Olaf coming in to discuss what he saw from the night before.
Time crawwwwwwls while my waistline is obviously expanding. I decide to go rogue and call Bug's geneticist in Minneapolis on the off-chance they could see us while we visit next month. I have yet to feel so comprehensively taken care of as I did when we lived in Minnesota, and with the exception of her ophthalmologist out here, I have found all of the medical care (and school districts and early intervention services) lacking.
I assume they will brush me off as we haven't been seen in almost three years, but the nurse kindly takes down all of my information and tells me they will call me back. In my mind I am OK if they have no appointments next month, because I know how far out they book and that we will be home again in December, or even if the doctor says that it doesn't make sense for her to see us again.
Olaf finally shows up, and I feel like tackling him and demanding information FASTER NOW TELL ME NOW NOW NOW.
It's the same as he saw the previous night, but now he is noticing discharges from other parts of her brain (the previous night it seemed to be only in one spot). This does not give him any additional answers. "She has had normal EEGs in the past?" he asks us again. "Yes," I say. I have brought her medical records from home as he asked, so I hand them to him to look through later. He tells us that her EEG reads abnormally as well as she enters each stage of sleep. My memory of this is fuzzy, so forgive me, but there is something about some kind of spindle or discharge that happens every ___ interval during normal sleep, but she can go hours without having one. I have no idea what this means or implies.
He also tells us that she's discharging an enormous amount of energy. Normally your brain discharges something in the area of 10-30 microamps (I could have remembered these numbers not exactly correctly), but she discharges in the hundreds of microamps, which is more consistent with a small infant. In my head I think, is there some legitimacy to when we say she runs at such a higher level than everyone else? I feel like her engine is red-lining during normal tasks. Or when we half-joke that she sleeps the same amount as a baby? I ask him some variant of this but he can't tell me, "yes." Boo. I also ask about her odd sleep cycles - could this be a cause of her fatigue, if her sleep cycles are not normal? He cannot tell me one way or another.
He reminds us again that the reason that EEGs are an effective tool is that we have been doing them for a hundred years, so we have an enormous mountain of data to use to determine what is normal and abnormal. But that's basically its utility. There are more sensitive EEGs available, that have five times as many electrodes, but they haven't been in use for very long, so it's hard to say what all that additional data means. He says, "In our context right now, knowing if the discharge is coming from [he points to the back of his head] here," he moves his finger a half an inch to the right, "here," then he moves his finger an inch and a half to the left, "or here is insignificant. There are other diagnostics out there that measure the magnetic field given off by the brain (because brains give off electricity there is also a magnetic field to be measured) that can better pinpoint things, but again that does not help us. If she were having surgery, and something needed to be removed very specifically, then yes, we would of course use the magnetic one. But for this, it again wouldn't help."
Sigh.
Since he has last seen us, we have pushed the button [that marks an event on her EEG] several times. He tells us that every time we pushed the button, there was no seizure activity, even when she was twitching while sitting on my lap. I know this is good but I am consumed with this other piece that has hit us from left field.
Because last night was consistent with the previous night, and consistent with each time she has fallen asleep during the day, he doesn't need any more data. He says that if we feel comfortable that we have captured as many episodes as we think will happen in this environment (she does more staring when she's in a chaotic, unfamiliar environment, which is not a whatever by whatever hospital room) then he is comfortable with us going home. This is such a double-edged sword. I'm happy to go home but not happy that it is because she has been consistently abnormal.
She is still fevering and they have still not offered us an acute-care physician. Olaf has to look in her ears because I have asked, which I think is ludicrous.
We decide that yes, we will leave today. He wants one more additional test with a strobe light, and we agree to do it before we go, so he shakes our hands and leaves. She is fading fast on the bed. All of a sudden we get a knock on the door and there is a therapy dog who wants to visit us. I think she will love this so I invite them in. We can barely get her to sit up to see the dog. I make her take a photo and force her to smile about it:
The dog leaves after being pet mostly by me, and she immediately falls asleep.
The EEG techs barge into the room a short time later to do the strobe light test, and we immediately shush them away because she is sleeping. I think it is terrible to wake her up, especially since she is sick. We agree for them to come back in an hour.
A short time later the charge nurse comes in and tells us that "we need this room for someone else, so… can we wake her up so you can leave?" I am APPALLED. Thanks for making us feel like we are not worth anything, and for not taking my child's health into account whatsoever. I say to her, "we are technically booked for this room for another day. What would you do if we decided not to leave early?" She does not have an answer for me. I am FUMING.
Eventually because of all of this in and out, Bug wakes a short time later. They do the strobe light test and then remove her electrodes. She is PISSED.
I give her an awkward shower to try and clean her hair of all the goo while Matt starts to load the car. I have written off all of the nursing staff as terrible people and I cannot wait to leave. I call the hospital complaint line and leave a message.
We get a wagon which momentarily perks her up on the way out.
We go straight from the hospital to get her frozen yogurt. For all that she's been through she has earned daily frozen yogurt for the next four years.
God she looks TERRIBLE.
She eats. Hooray! We get home. We put her down to nap, but she doesn't fall asleep. I tell her she can just get up. She comes out of her room and she is BLAZING. We decide to take her into her pediatrician, because it is still office hours.
We get there and her fever is BONANZA again. They immediately dose her with Tylenol while we are in the waiting room.
A half hour or so later (it honestly went by quickly, and we were a last-second add) you could still fry an egg on her. They give her ibuprofen (2 tsp this time, finally). The doctor is flabbergasted at how much they under dosed her while we were there, and that they discharged us while she had a fever. I KNOW, I say. It is disgusting. They did nothing. NOTHING.
They do a rapid strep test and she is so over taking all this medicine and being poked and stuck that they have to use a tongue depressor to gag her to get her to open her mouth. It is terrible.
The rapid strep test is negative.
We are sent home with a dosing schedule for Tylenol and ibuprofen. She has perked up since all the stuff has kicked in. We stop at Target to replenish our supply.
The night goes poorly. We have to wake her up to take the meds and she's mad. Each time there are tears and threats and bribes to get her to swallow it. We skip one wake up and let her sleep through a deadline and I regret it when I go in there at 2 a.m. to check on her and she's on fire. We have to double dose her again and then I make her stay up and watch TV with me while I cover her in cool washcloths so I can be sure that the fever is coming down.
The next morning I give her more ibuprofen and she throws it all up twenty minutes later. I don't even want to think about what it is doing to her stomach, especially since she won't eat, and I feel TERRIBLE (but clearly not as terrible as she feels). After she throws up she feels better, and I call her pediatrician again. The nurse tells me that twenty minutes is enough for some of it to have been absorbed, and that I can give her more Tylenol. Thank goodness you're not a drinker, Bug! Because your poor liver, too…
I am beside myself the entire day.
Eventually after her nap she wakes up and the fever is down in the 99 range, and she has perked up. I ask her if she wants to go to the mall. Of course she does. I tell her I will buy her an "Ariel with a tail" if she takes another dose of Tylenol.
We get to the mall and she is tired but in good spirits. I take her to the Disney store. She has never been in a Disney store before. It's clearly mind blowing for her.
Target acquired!
"There are SO MANY toys here, Mom!" she says. I know!
I ask her if she wants to go back home, but she says to me, "let's just walk around the mall, Mom." Yes, ma'am.
Matt meets us at the mall and we wander around. I try on bras and fail to find anything I like because all bras are evil and completely unnecessary when one is *technically* an A cup. While we are at Macy's the hospital calls me back about my complaint. The woman on the phone is appalled by what I tell her, and apologizes profusely, but it doesn't mean much. I don't know what they can offer me as consolation, all I know is that ensuring "it doesn't happen to anyone else," doesn't make me feel any better.
She starts to lose it. She says she wants to eat dinner "at a restaurant" but we are thinking this is a terrible idea. We get her home and make her mac and cheese (her choice) but she doesn't eat any of it. She goes to bed and I set myself an alarm every two hours to go in there and check on her. I end up waking her up to take more ibuprofen.
This morning she still has a fever. I stare at my watch, waiting for 8:30 so I can call for an appointment.
All of a sudden my phone rings with a 651 number (St. Paul, MN). Who is this, I wonder. My dad's work number has a 651 area code, but he normally will call from his cell phone. I answer, and it is HER GENETICIST. Calling me back, personally, within 24 hours. This would never happen here in California. We talk on the phone for a while. I explain what has happened both this week and in the last two years in, I'm sure, a completely incoherent manner. She listens patiently and sounds legitimately concerned about what I have told her, which is the opposite of all the poo-heads out here. She asks about several other blood tests and wonders aloud why they weren't also ordered. She asks if Bug's AFP (alpha-fetoprotein) was ever re-checked. My stomach drops and I say, "no, it wasn't." When Bug was an infant there was a lot of concern about her AFP levels (it is a tumor marker, and if abnormal, can also indicate other disorders). In theory hers dropped enough for them to stop re-testing it, but we never had a test after we left MN to confirm that it had indeed dropped.
She agrees ("of course") to see us when we get back, and recommends a new doctor that has just joined them at Children's who specializes in metabolic disorders. I say, "of course we will see him." I am to send her all of her records. We hang up and I immediately call Bug's neurologist here to see about the additional blood work. I have no idea if the tests are able to be ordered by her pediatrician, and I know that these things can take time, so I figure I'll call the neurologist first just in case.
I call the neuro office and am reminded by the nurse that the doctor only works on Mondays and Tuesdays, so essentially I'm SOL. "We can try and send her a message but we have no way of guaranteeing she will see it, or that she has computer access to enter an order." This whole thing is so ludicrous. The nurse does tell me that the tests I have mentioned are "relatively standard" so that she thinks the pediatrician can write the order.
After I hang up I call Matt in tears. I am simultaneously panicked and comforted by Dr. M's (genetics in MN) reaction on the phone. Why can't anyone here have her sense of urgency? Why is the care so lacking? Why is the doctor I haven't seen in three years the only one to call me back promptly and in person? What if her AFP results are wonky? I cannot think about that last one. I want to go home to have her taken care of. I don't know if this is a rational or irrational thought but I am momentarily consumed by it.
I realize it's now after 8:30 so I call her pediatrician to make the appointment. We get one for 9:45 (do you know this is the third pediatricians office we've been at here, and that I left the other ones because they never had same-day sick appointments? And no one ever called me back? I and could never see the same doctor? You'd never know those things were so hard to find). With all of her stomach aches and complaints about how food "tastes funny" I ask for another strep test. The nurse doesn't need to use the tongue depressor but she does, in my mind, scrape Bug's throat for an inordinately long amount of time, and she is understandably EXTREMELY DISTRESSED about this. Poor baby. I feel so, so badly for her.
The doctor comes in (a different one from yesterday, although the practice only has three, and I adore them all equally) and we talk about what's going on. While we're talking the nurse comes back and says that the strep test is positive. "Faintly," she tells the doctor, who looks at it and says, "positive enough for me."
We talk more about Bug's reaction to fever (we have told her before) and she is amazed that it is so directly related to body temperature. In some ways you'd think that while she's sick, even if the fever was momentarily suppressed she'd still suffer the same way if there was something chemically different occurring during the illness. And while she does act differently when sick (like all kids do) it's the high fever that gets her. As soon as it is controlled she regains the ability to walk. IT IS SO WEIRD.
She writes us out a prescription for the blood tests I have asked for in addition to some antibiotics. I am hoping that the antibiotics will help (obviously) and take away her fever because I don't want to give her any more acetaminophen/ibuprofen. My thought is she had a viral infection of some kind initially and then while she was down, she developed strep throat (she normally doesn't fever that high just because of strep).
While we were at Target getting the prescription filled she started acting super naughty, so I'm hoping this means that we're on the upswing.
I have had no desire or opportunity to run or workout since Tuesday and it's stressing me out even more. And there's a disgusting heat wave coming this weekend and we have no AC.
I'm not ready to leave California but maybe it's time, at least temporarily.
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