Last night was unbelievably difficult. If you saw any of my updates on Facebook from the middle of the night, you could probably tell. In a 24-hour period, she slept 4 hours, from 6-10pm. Once she woke up at 10 (ready to beat the band), I waited to see if she would calm down and settle down again. It was stormy with tornado weather, and very dark, so all the cues for her body to go to sleep were there. But it made no difference to her.
At 11:30, I had the nurse check to see what meds the residents had ordered for her to take now that she was "crazy" again. To my surprise, they hadn't ordered ANY rescue meds. I was astounded, since we needed them just the night before, and her condition hadn't improved enough to take the order off. I had her call the resident on call (not neurology), and she effectively told me that she wouldn't do anything because her hands were tied--no orders were written. We'd "have to wait until morning rounds."
Now, if you've spent any time in a hospital, you know that was nothing but "passing the buck." They have multiple pagers at their disposal they could call; not the least of which, the neurology pager.
But in an effort to not rock the boat too much (I hate to come across as a pushy mother!), I just accepted it, praying she would be quiet enough for me to get decent sleep.
I slept lightly from 1 to 3. By three she was being very loud. She had started laughing and hyperventilating--to the point where the EKG leads were picking up on it, and sounding the alarm on the machine.
I had had enough. We had been doing this mess for 3 weeks now, and I was THERE to get it fixed. NOT live with it some more. It wasn't as if I could even go out to the living room and get away or anything. I was drained emotionally, physically, and mentally.
I called her nurse and told her, "Feel free to blame it on me, but I need you to call that resident NOW, and tell them that I want to see him, ASAP."
Poor girl! Her eyes were like a deer in headlights, and she just nodded her head vigorously as she quickly shuffled out the door.
Fairly quickly, Dr. Harmon walks in the door--a young, potentially wet-behind the ears resident who had been stuck on the most unforgiving shift--the graveyard shift. Again, he told me that there was nothing he could do, because the orders hadn't been written. However, I KNEW he had those pager numbers, and I KNEW he really didn't want to call his higher-ups and wake them (I mean, honestly, why give me an excuse when you can clearly see how manic she was acting and the tears pouring down my face? He just didn't want to DO IT.) And after I pointed out the fact that neurology was only a phone call away, he went ahead and made the call and got her some rescue meds.
Unfortunately, it didn't really help. She didn't respond to them, truly, but just zonked out 2 hours later from 8 straight hours of intense activity. The drug should've worked within minutes.
I was an absolute zombie this morning, and everyone could tell. In my normal hospital routine, I would be out of bed around 6:30, wash up, get dressed, and tidy the room for the multiple doctors, nurses, and techs that would shuffle through before 10am. But not this morning. I curled up on my chair-bed, and didn't give two licks who came through the door or in what condition they saw me--the rumpled clothes, frizzed out hair, or tear-stained face.
At about 8:30, after many interruptions of nurses, breakfast, and residents, the attending neurology physician walks in. She's a no-nonsense kinda gal and got straight to the point:
"How much sleep did you get last night?"
"Wha?" I answer in my fog, "You mean, how much sleep did SHE get last night?"
"No. I KNOW she didn't sleep last night. Did YOU get ANY sleep?"
"I think I dozed for 2 hours."
"Ok, well then here's what I want to do. You need to go home. You don't need to be here any longer. This is not good for YOU. I can take care of HER, but I need you to get some sleep, and keep your resistance up so you don't get sick here. I'm gonna shake every tree in this hospital so I can get her into a Special Care unit, and you don't have to stay with her at night any more. I'll even put her in ICU if I have to!"
And shake she did. Within a couple of hours, she had her on the 7th floor in their "Cube:" A 6 bed open dorm for children who's parents can't stay with them. It's usually reserved for very long-term patients who's parents have had to resume a normal schedule (work, school, etc.). There are a couple of nurses who are responsible for the kids in the Cube. There is no privacy besides the pull around curtains typical of old-fashioned hospital wards. It's a noisy, cluttered, busy space.....depending on how many beds are taken.
Currently, the 7th NW Cube is housing 2 children: Michaela, and Makayla.
No joke :)
After the Attending made her grand announcement (of which, I was grateful for her compassion, but uneasy about leaving Michaela), she brought me right on down to the second floor where they upload the EEG information to the general server. So here's me, the Attending, and the three "ducklings" (residents) that follow her every move, marching down the hall. Again, I was still in my bed clothes, rumpled, ruffled, and still foggy. We got the EEG uploaded and she flipped through hours and hours of recordings....looking for a clue to what we were dealing with.
"Kelly, tell me, why does Chief think Michaela has LGS? This doesn't look like classic LGS."
Taken aback at such an unexpected statement, I proceeded to spout out the three qualifications for LGS: Slow wave/spike pattern on the EEG, medically uncontrollable seizures, and mental retardation. Classic onset, 3-7 years. She fit all the criteria.
Well, for some reason, the EEG didn't look classic LGS to the attending. She got real animated and proceeded to tell me how she "wanted to see previous EEGs," and "we gotta get to the bottom of this." Head Duckling noted how many drugs she was on, and how they would make the EEG different....but she was a woman on a mission. She was ready to save the world. Truly, she wasn't knocking Chief's diagnosis, but with no leads in Michaela's case the past few days, I think she was just excited to see something she could try to figure out.
The Lord knows, there wasn't much else exciting about Boo's case.
After working out the details of a hotel room for me courtesy of Children's Hospital (because, no, I was NOT going home....yet. She still needs a Mother close by!), I proceeded to find Chief. I really liked the new attending physician, but there's nothing like touching base with your child's personal doctor. I knew that in my emotional state, once he saw me, he would be glad to talk to me--even without an appointment...he's just like that.
But when I got to his office, he was in a meeting. The meeting room was just across from the secretary's desk, and I could hear his voice.
They were talking about Michaela.
I quietly excused myself, and walked back to our room. Once I got there, the nurse told me that she was told to page Chief when I came back. Come to find out, while I was figuring out the hotel stuff, he was in my room with Michaela. Since I didn't show up, he went up to his office to talk to the other docs about her case--the meeting I heard.
He came back down to the room and we talked. We are both stumped. The attending is stumped. No one is quite sure what to do. Even the psychiatric physician (who walked in on our meeting), was clueless as to the cause and cure to her problem. They're just making the best educated guesses they can.
I just wanted to know if I was getting my daughter back again.
Chief thinks she'll be back. But he's not sure at what cost. Or when.
It was easy to hear it from him, but it was very hard to hear.
I voiced my opinion, asked my questions (very few answers...don't worry, I'm getting used to it), and stood back and asked BOTH doctors,
"OK, you guys are the professionals. We need a plan until tomorrow at least. Chief, do you have a plan for today? Dr. Psych, do YOU have a plan for today?"
They both said they did, and so, we're off....
I'm doing better this evening. This Cube is something spiffy. I'm only allowed here during visiting hours, and so I don't feel too bad about letting the nurses do all the nursing. Not that I won't help, but it's been nice to know that I don't feel obligated to. I'm not stuck in a room. I don't have that claustrophobic/jail feeling anymore. And the nurses aren't used to having parents here, so they don't expect anything out of me. Michaela doesn't even seem to know that I exist anyway. Which means I'm "free to roam the country" so to speak. Which is nice, when all you want to do is go grab some lunch...
And get some sleep :)