Today is Tuesday, and we're still here.
Partially because the weather has been so horrible. The various staff members: nurses, doctors, techs, support staff were all finding vacant rooms to sleep in and pulling double shifts. There wasn't anyone here to discharge her, and Chief was stuck at home and couldn't readmit her if he wanted to. Everything was on a "freeze," so to speak.
Do you remember when I talked about her being in "status" back in November? Well, that's where she was again starting Sunday. Even AFTER reintroducing meds. She just laid around and stared and drooled. Every now and then, her face would get contorted in a partial seizure, or her arm would quiver. But mostly, she just looked drugged up and out of it.
Sunday night she just seized and seized.
By Monday, they were giving her rescue meds because the vEEG looked so bad. 3 huge loads of anti-seizure drugs later, and she was still out of it much more than she was aware of her surroundings.
Dr. E braved the treacherous roads to come in to see her and figure out what to do.
While she was here, she told me the news I was expecting, but wanted so badly to not hear:
"We simply cannot do surgery on this child. Her seizures are coming from too many places."
I felt my heart sink at that point. I think a heart can truly do that. It stops beating just long enough to drop out of position, scarring it permanently, before it returns to it's normal rhythm and place.
She continued, "I want to place a VNS. I think it could be a good option for her considering the psychosis and the global seizures she deals with."
The Vagal Nerve Stimulator is a sort of "pacemaker" for the brain. About the size of a large quarter, it is surgically implanted under the skin of the chest wall, and two wires are run under the skin and wrapped around the vagal nerve that runs up the back of the neck and into the brain. They don't know why it can stop seizures, but it does in some cases. It has also been proven to help psychiatric issues in some cases as well.
The rule of thumb, is that a VNS is as effective as medication. Yet, with kids like Michaela who have severe epilepsy, medications aren't that effective.
So the odds are NOT in our favor.
On top of that, the settings on the VNS need to be tweaked many times in order to get it to the right frequency to help the person. Then it may not actually show that it works for a year.
That's a long time.
Dr. E could tell that I wasn't happy with the idea of the VNS. I've never liked the thing, personally. I always felt that it was too inconsistent to warrant it's use in cases of severe epilepsy. For one thing: it's permanent. They don't take them out. That's a big drawback in my mind. I mean, why would I want to put some metal contraption in my kid's body that might not work?? Ack. You're looking at a parent who hates giving her kids Tylenol, never mind implanting a foreign object in one of them! So right there, I don't like this thing.
And I told her how I felt, not just on that point, but on others as well. But when it really came down to it, she just calmly looked me in the eye, and told me,
"You don't have any other options."
....yeah, that seems to be the story of my life lately.
....and I effectively turned away so she wouldn't see my eyes well up.
Without wanting to say it and offend her, I really just wanted to talk to Chief about it. Not because I thought he would have a different opinion. Not because I thought he would say something more convincing. Not because I thought he had another option stuck up his proverbial sleeve.
But because he's our doctor and I trust him. He has this way about him that puts me at ease, like I don't have to impress anyone, and I know that I can even ask the "stupid" questions.
So when she could see my internal struggle, and emotional distress, she offered, "Why don't you talk to Chief about it tomorrow? That would help you."
"Yeah. I would really like to, first."
"Of course. He's been your doctor forever. You need to talk to him."
I got up early to pack up our stuff so we could move out of the EMU. I knew that they would get all those electrodes and bandages off the top of her head pretty early, so I made sure I was ready for them.
But they never came.
Come to find out, Dr. E had surgery duty today, and they didn't need to use our EMU room for another patient yet. So they just decided to let us stay there for the extra day, especially since we were waiting to see about the VNS.
In the meantime, Ally came by to see me. She knew I had gotten bad news, and like always, was wondering how I was doing.
I've been better, I told her. She understood. And tried to console me as best she could.
Out of all the comforting things she said to me while she visited, one thing really stood out:
"You would not believe all the doctors that have been in and out of my office today, Kelly. It seems like everyone wants to know how Michaela is, or is bouncing ideas around to see if there's anything else that can be done. Dr. Head Honcho has been by, and Dr. F came by with some literature on another form of therapy that he thought might work. Chief himself has been in my office 4 times today, and even he was trying to think of something else we haven't thought of. We're really pulling for Michaela."
That felt so good, I cannot even tell you.
Through this long ordeal, we've met most every neurologist that services Children's. They've each been attending on her case, most of them twice. They have all been very kind and sympathetic. Even when we didn't see eye to eye, I can honestly say, they are all very nice people.
This just proves it out again.
Michaela is not everyone's patient, she's Chief's. But today, it was very obvious that she is everyone's child, to Neurology. They are all trying to help her through this.
Which helps me.
And although Ally assured me that none of the potential ideas would work, for one reason or another, it just felt good to know that others were thinking about her. These are some of the best and brightest pediatric neurologists in the country...
...and they care about my little girl.
So Chief came through to talk about the VNS.
We have this unspoken language between us, that we established years ago: If things are rough, for either one of us, the handshake is a little bit longer than usual. It's just a simple way to say, (without saying): "It's gonna be alright." or, "I know you're hurting." or, "I wish it were better."
It's the handshake I used when he was sick for 6 months straight, and limped into our hospital room. The one for when his favorite uncle was dying a few years back.
And it's the one he used today, knowing that I had just gotten that painful news.
He sits down, sighing, realizing that this is going to be a continuation of the sad conversations we've had these past few months.
"So the surgery is a no-go."
I look away, from the pain of the thought, "Yeah."
"I really think the VNS could help."
"I know you do."
We went on to discuss the particulars of it. He had figured out how many patients he'd had on it, what complications he'd seen, the successes he knew of. To be honest, I was interested in the facts of what he was saying, but my heart was not engaged in the conversation. I didn't want to do it, plain and simple. But I had no choice left to help her, plain and simple.
Chris' only objection, was if Chief had an objection. Which of course, he didn't.
But I had to resign myself to the therapy, and resign I did. I told him flat out, "If you want to do it, Chief, we're doing it. I don't like it, I never have, but we'll do what you think is best."
He stared at me for the longest time, which was probably only 2 seconds. He seemed to be trying to figure me out, determine if I was going to be ok with this whole idea. He squinted a bit, and I could tell he wasn't sure if I was truly alright with the plan.
"Chief, it's ok. I'll be fine with it. I don't have to like it, to know I have to do it."
As soon as I had accepted the fact that we would be implanting the device, I was ready to move on. I wanted to talk about something else. Something more important. Something that needed to be addressed.
The fact that Michaela wasn't back to us yet.
It's all fine and dandy that we're putting in the device and she may get help from it, but that could be a year from now. What about the present? What about the fact that my baby isn't well.....now?
What are you going to do about this, Chief?
I can honestly tell you, that I was NOT expecting his answer.
"Boss, I don't want to do anything else. We need to let this be what it is."
My eyes spoke volumes, "What? Seriously? You don't want to do anything else? How can you say that? We've gotten her out of status twice already. Why not now?"
"Boss, we've tried already. She's had 2 doses of Ativan, and one of Tranxene."
"But Chief, those are benzos (a family of meds). She never responds well to those. You didn't even use a benzo last time she was in status!"
"I know, but I don't want to make her worse. If I try to get her out of it again, it could make things much worse. I could put her in the PICU, intubate her, put her in a coma, flatline her EEG for a week, and then what? She comes to, but her airway is now damaged and she needs a trach? She is exposed to infection after infection? She wakes up normal, but it only lasts a week? All that for a week?"
I stared at the floor.
Gently, he continued, "Boss, I want to say this right...."
"Just say it."
"We've got two extremes," he sighed. "On one hand, she's psychotic and manic. I can't send her home like that. On the other hand, she's like this," he gestures toward her limp form. "I can send her home like this, and I know you can handle it. You can live your lives, and she can be with you."
"It's all about quality of life, now. We've got to get back to that."
My eyes shoot up to meet his, and in an unintentional accusing tone, "Quality of life? Who's?? She has so little now!"
"Yours. And Chris'. That's important too. The kids, Boss...I have to think about all of you."
I know he's right. Chris had said the same thing just the other night, and it stung my mind as he said it.
"You're right. She's more manageable like this."
The information is too much. I lean over to wrap my head in my arms, shielding my emotions from any more darts of truth I can't stand to face.
"I don't feel as though I've satisfied your mind, Boss."
"You haven't. But we're beyond that. You can't say it nice enough to make it feel ok. I'm honestly just trying hard to not cry right now."
"Why? You should cry about this."
"Because I don't like to cry in front of you. I don't get ruffled easily, and I don't like my emotions to get in the way of making a rational decision. You are here to give me information. I can't process that properly if I'm crying." In my mind, I had already done enough crying in front of him the other day. It was enough for a long time.
"Boss, these decision require an emotional response. It's alright. I don't mind if you cry."
"I'll cry, Chief. You just won't be here."
"You'll cry later."
"Yeah.....I always do."
And I did.
As soon as he left.