Monday, January 31, 2011

It is Well.

It is Well...

...with Michaela.

She is doing EXCEPTIONAL.

I can see her again. I can see her. Her eyes are bright again. Her face lights up and her smile is genuine. She talks with clarity. Civil clarity.

Her mind is clear.

She is back.

The issues we are currently dealing with, pale in comparison to what we saw in the hospital. It took some time, but she pulled out of that zombie-like state, and now only deals with some very benign handicaps.

Mainly, one of her meds causes a slight-to-pronounced tremor, depending on the time of day. She can be very unsteady. Let’s just say she can quake like the San Andreas. But it’s not all the time, and it’s not always that bad. Sometimes, it’s really not a big deal. She works with it. I don’t feel comfortable with her walking around on her own yet, and we use her wheelchair in all public places, but it could be worse. She could be completely immobile, like she was in the hospital. Also, when we first came home, she would sleep constantly. She would be alert for a brief time each morning until she got her meds, and then she was like jello. I learned the hard way to put her to bed or in her wheelchair before I dosed her--she was that lethargic, almost within minutes. Then she would sleep all day. But now, she appears to have gotten used to it more. If we’re out and about, she stays awake a whole lot longer, and can even move purposefully (as opposed to like jello) after being dosed. The improvement is very obvious.

Surprisingly, she still hallucinates slightly. But thankfully, her voice has gotten markedly quieter since she came home and started talking again. I have to strain to hear her sometimes, which is a HUGE difference from the past....oh, I dunno, year or so? So the slight hallucinating every so often is really no big deal. Definitely nothing I would make an issue of. She was getting too hyper and manic at the beginning of last week, to the point where she even ripped her g-tube out. We quickly upped one of her meds, and all is calm again. I will take calmly talking to invisible people over mania any day. Like the background seizure activity she has lived with for many years, this psychotic stuff might always be just in the background at the least. If so, background is fine. All-encompassing is not. Hopefully, “all-encompassing” will be a thing of the past.

There is also a cough that interrupts her when she eats, and we just started seeing her pupils dilate unevenly (although Chris says he’s seen it before). The cough is a well-known side-effect of the VNS. Unfortunately for Boo, she already deals with aspiration when she eats, which makes her cough. Add the “VNS cough” and it makes for some messy meals. I’m just keeping my eyes on it for now, to make sure the problem isn’t getting worse. So far, it’s only an annoyance. As far as the pupils go, uneven pupils can be a sign of some pretty nasty stuff. Hers only do it intermittently. Some people’s eyes just do it without any problem, however; and we hope that hers is just a by-product of the trauma her brain has been through and not a new development. Chief warned us that if she gets headaches or vomits with it, or if one eye “does it’s own thing,” we should be going to the ER. Thankfully, I don’t think it will be an issue.

Overall, what do I have to complain about? My girl is back from the depths of some pretty miserable stuff. I was on the verge of putting her in an institution. Then for all intents and purposes, it looked like she would exist in a stupor; just an invalid. Neither came to pass.

I know mercy when I see it.

And I’m grateful.


It is Well...

...with me.

I get to be full-time Mommy again. A full-time wife.

I get to be home.

Home...It represents so many things.

Everyone who knows how long I was gone, who knows I'm a housewife, who hears that I homeschool, and especially who hears of how many children I have, knows instinctively that I MUST have been anxious to get back to my life.

They were right.

My world revolves around this address. My husband, so diligent to work a full-time job while attending the University as a full-time engineering senior. My 5 other children, ages 4-11, constantly growing, learning, changing--needing a Mama. My little farmhouse, seemingly sagging and moaning under the lack of routine care and maintenance. My church family, temporarily taking my place in many, many ways.

It's all here, just turning and twisting on an off-kilter axis without me.

I've built my life juggling these balls, and I don't regret setting them in motion. There is something so satisfying about building your life around relationships and investing your happiness in other people. Yes, there are risks involved in that. I understand the consequences.

But I could never have it any other way.

Because see, there is Michaela. The other ball in my act. Slightly un-round, slightly unbalanced, but just as vibrant as the others. I take great care to toss her in the mix with as much strength as every other ball. Even though it takes more effort, more skill...

...more risk.

Someday, she may just fall and break my heart.

But it will have been worth every moment.

I would never have it any other way.


It is Well...

...with my soul.

When you go through things that try you, that stretch you, it seems as though people expect your very foundation to be rocked. That you will either dig deep and learn a true lesson of life; turn to God, or you will curse God and move in a different direction.

And, perhaps that happens for a lot of people.

But I can honestly say, that is not my testimony.

On either count.

I don’t think there was one moment when my faith was tried. No, I KNOW there wasn’t one moment. Not one.

Did things end up the way I thought they would? Nope.

That doesn’t bother me.

Did I expect something exciting in Michaela’s condition at the end of it all? Yes. I could see a different outcome. A “good” coming from the “bad.”

But I didn’t pivot anything on it. Not my faith, not my trust, not my foundation.

I decided a long time ago that I would look for the good in situations and focus on that. “Good” is subjective. It varies. It changes. If the good that presented itself yesterday, is not available today, that doesn’t mean it wasn’t good yesterday. It was still the thing to focus on for that day.

But when things weren’t good, and I even felt somewhat in despair, I always knew that it was simply temporary. A door I needed to go through in the journey. And God still fits into all of that.

Even though those types of things cause people to negate God--when things change for the worse. For me, it does nothing more than reiterate His omniscience. From my perspective, life is like a chess game, and God is undefeated. He knows so many moves ahead of the present, that I couldn’t possibly argue with Him on His choice of placement. I can often see the move as it is and see the intelligence in it, even when it turns out to not lead to another move I imagined.

And then sometimes, the move makes no sense at all.

But the fact still remains: my perspective is altogether at a disadvantage. And I don’t question Him.

At all.

People often blame God for the bad, and despise Him for not correcting it. And then some people will criticize medicine, and shout it’s shortcomings from the rooftops. But I see the Divine in the midst of both scenarios, and can hardly say anything demeaning about either one.

Even when I’ve experienced both. It simply doesn’t move me.

Albert Einstein once said, “Science without religion is [crippled]. Religion without science is blind.”

I choose to believe that God has put a lot of time and thought into the science we base our daily existence on. The medicine we practice. The whole of what we know today would not be ours to claim if it weren’t for God’s generous outpouring of knowledge, skill, and tenacity. He’s allowed humankind to know what we know, and to use what we know for our good. Science, medicine, is a gift.

But it is manipulated by imperfect hands. Scientists, or doctors, are not gods. They are at the mercy of their own limitations. Limitations set by God.

So, in this light, I will not allow myself to get bent out of shape at the “grass roots level” when things don’t go the way I had planned. Science has done wonderful things for Michaela. God has allowed it, and I’m grateful. But when science, and even great human minds, can do nothing for Michaela, I refuse to let that rock me.

God can always do something for her.

And if He chooses not to, so be it. That will not rock me either.

I accept the fact that the next move on the board is unclear to me, and I’m perfectly ok with whatever position He takes next. I continue to make my own moves, relying on plays He has pointed out in the past, or holes in the board that seem to open up. Some based on science, and some based on faith.

When it comes down to it, however, I know He will win the game. Yet, I’m enjoying playing with Him anyway.

Because someday, I believe that I will clearly see that He was playing with MY pieces all along.


I know I can tend to wax philosophical, and definitely allegorical, so here’s the words to a song that just seems to simply sum it all up:

I’m running back to Your promises

One more time
Lord, that’s all I can hold on to
I gotta say this has taken me by surprise

But nothing surprises You
Before a heartache can ever touch my life
It has to go through Your hands
And even though I keep asking why, I keep asking why

No matter what, I’m gonna love You
No matter what, I’m gonna need You
I know that You can find a way to keep me from the pain
But if not, if not, I’ll trust You

No matter what, no matter what

When I’m stuck in this nothingness by myself
I’m just sitting in silence
There’s no way I can make it without Your help

I won’t even try it
I know You have Your reasons for everything

So I will keep believing
Whatever I might be feeling

God You are my hope
And You’ll be my strength

Anything I don’t have You can give it to me

But it’s OK if You don’t
I’m not here for those things
The touch of Your love is enough on it’s own
No matter what I still love You and I’m gonna need You

-Kerrie Roberts, “No Matter What”

Yup. That about says it all.

Wednesday, January 19, 2011

No More Missing Link

Have you ever found something that you think is so clever, or makes your life easier, or even just takes a load off your mind?

Sure you have. We all have.

I did again recently, as well. And actually, to be honest, it didn't just make my life easier, or give me some peace of mind, or even strike me as really ingenious.

It did all three.

For years now, I have been wanting to have a way to communicate Michaela's medical needs when there is an emergency. You know, I'm thinking ahead. Being prepared. Not that I am automatically assuming there WILL be a problem, but it's more that I'm being practical and realistic. You are just plain procrastinating if you DON'T prepare for medical emergencies when you have a loved one with serious medical issues.

In some ways, I've taken care of this issue. I carry with me a jump drive with a combo lock on it, that contains all her medical info and all the software a hospital anywhere in the world would need to open those documents. I also make sure that the school and any babysitters (if we go out of town) have medical documentation as well.

Problem is, either I or her caregivers would have to be physically present in order to give the hospital that information. And more specifically, we'd have to be conscious.

But we all know, that in the case of an accident or medical emergency, that just isn't always possible.

And that has really bothered me. I simply hated the fact that there was this "missing link" in the chain of safety for her.

So I have looked into the options, and none of them seemed really worthwhile. The most
common method of communication in the event of an emergency is the medical alert bracelet (or necklace). I have looked at those things for YEARS at our local drugstore. Debating back and forth every time if it is something I should buy.

Not that they're expensive or anything, it's not that. I don't even think Michaela would care if she were wearing it or not, so that didn't deter me either. It was simply the fact that a bracelet with the word "Epilepsy" on it just wasn't going to do the trick for Michaela. There was no way.

I mean, do you get it? How can one word really help in the event of an emergency? Granted, I guess you can have something engraved on the other side with a little more info, but it's seriously restricted. Too restricted. Michaela's medical needs are pretty complex. She doesn't have a condition that follows the rules. You can't just wheel her unconscious into an E.R. and pump her up with the normal epilepsy drug protocol.

But I am assuming that's exactly what WOULD happen if they saw her wearing that bracelet.

Seriously? They've made drug mistakes with ME sitting right there! Last time she was in the E.R., they were about to give her a med that A) should not be mixed with a drug she was already taking and B) had potentially deadly consequences for her. Someone didn't notice the memo in her chart. Good thing I was there.

Doesn't help my mind in the event that I'm not.


Ok, so now that I've explained my concerns, let me just tell YOU about this little gem that I found!

Beloved Readers, let me introduce you to...


The Invisible Bracelet!!

...or iB for short :)

What is so very cool about the iB, what is so incredibly clever, what makes my life easier and gives me peace of mind, is the fact that it can do what those medical bracelets cannot.

It can give detailed personal information to emergency personnel in the event Michaela needs immediate care....and I am not available to help.

How it works is like this:

Everyone who registers with iB is given a card and keyfob or "badge" (depending on your preference) and assigned a PIN that is printed on them. This PIN, when texted to a short code number (those 5-digit numbers you can text stuff to? yeah, that), allows the person sending the PIN, to receive a text message back that gives them detailed information about you and your condition. Whatever you want them to know.

And depending on where you live, some paramedics are even connected to a more extensive version of this service, where they can access more information than in that simple text message.

For us, we use the "badge," called an ICEDOT. It attaches to Michaela's clothing, has the universal acronym for "In Case of Emergency" (ICE) on one side, and that PIN and short code number with clear instructions on the back.

If you were to text her PIN to that phone number, this is the kind of info you would get:

Michaela (Mi-KAY-la) Morris
13yo F
Lennox Gastaut Syndrome
All her current meds (and doses depending on space)
Drugs she's allergic to
Phone numbers where Chris and I can be reached
Chief's phone number

So right off the bat, those paramedics have a wealth of information right in their cell phones or in their emergency database. Instead of fumbling to determine what drugs she has in her system, or why she has a g-tube, or if they are gonna mess her up because they don't know her history, it's all right there.

They now know the meds.
They now know what NOT to give her, instead of finding out the hard way.
They now can get someone to look up Lennox Gastaut Syndrome to get a fuller medical picture.
They now can call Chief and Children's Hospital...the medical team that knows her best.

All because of the little round piece of plastic that I attach to her clothing every day.

No matter where we are, or even if she's just staying at home (hello? house fire?), she wears her iB ICEDOT.

But for those who carry a purse or a wallet or even a set of keys, you can get the card version of iB. It goes in your wallet just like any card you would hold there. There is also a keyfob card (like you would get from a grocery store) as well. Michaela rarely has any sort of carrying case with her, so the ICEDOT is just perfect for our situation. The company originally advertised this round red circle as a medical alert device for athletes in case of injury on the field. But as soon as I saw it and what it could do, I just knew that it had a much broader application.

For starters, it gave this Mom some serious peace of mind.


So now, I'm trying to get the word out and alert some people myself. I personally think that anybody who has a serious medical condition needs an iB:

Diabetes? (What if your blood sugar drops really bad?)
Epilepsy? (ok, explanation needed)
Allergies? (do you really want penicillin in the ER by mistake?)

ANY kind of medical condition that would require special instructions,

...requires an Invisible Bracelet.

Check out their website, will ya?

And let me know if it completes YOUR chain of safety as well!

Tuesday, January 11, 2011

Some Stories Just Don't Have Happy Endings

Well, Monday has come and gone: the day we were supposed to be discharged out of the EMU and either into Chief's care or to home, depending on if the psychosis came back.

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.

Including Michaela.



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.

Some cases.

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.

Or two.

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

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."

"I know."


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.

Friday, January 07, 2011


It's been a month since I updated. A long, boring, frustrating month.

As you know from my last note, Michaela has been living in Children's Hospital's psychiatric unit. And if you know me at all, then you know that her being there--away from me--was a challenge.

I could say a lot about that, but I won't go into much detail. Suffice it to say, there was little to no useful communication with me from the psych team, and I don't work that way. I spoke with Dr. Psych ONCE the whole time she was on the floor. Not acceptable.

And this lack of communication just led to problems, which led to distrust on my part.

In the medical field, you have to build trust. I have to have confidence that the doctors are doing their best for my sick child, and they have to believe that I will do my best to understand the concepts they explain (and if I don't, to ask again) and do what they say to do. Chief and I are a classic example. From day one, he proved that he was working to help her, by going obviously out of his way. And I have always given him the respect his training affords, and have followed the protocols he sets up. Even when I didn't originally agree with the treatment.

As far as respect goes, it is mutual. And now, it's built up to the point that it is not easily broken. It would take something awful huge and glaring for Chief to lose my trust and respect. I don't expect it to happen. I don't expect to lose his.

Psych?....well, psych pretty much bombed in the respect and trust department from day 1. It made for an anxiety-filled month. One I don't plan on repeating.


Which leads me into the rest of the story, starting January 3rd. Monday.

Ally had another couple of tests scheduled for the 3rd, ever since the end of Nov. One was a neuropysch evaluation, and the other was an extended, continuous video EEG through the 7th. The neuropsych eval was bumped up to the middle of Dec, but there wasn't any significant information gathered from it. We had already had a vEEG at the beginning of Nov, but Dr. E told me back then that she might want to redo this test a few more times.

So that's what we're doing this week. The second vEEG.

Because I have to stay with her for the test, Monday was the first time I had spent more than 4 hours with her since Dec 2nd. And boy, was IT an eye opener. When I had originally put her in the psych unit, she was hallucinating and slightly manic. On Monday, she was more manic, still talking to unseen people, and like back in October, she was talking incessantly half the night.

Needless to say, I was pretty upset.

I had put my child in the psych unit to get better...not worse. And it was pretty obvious to me that she had regressed and wasn't even doing as well as on Dec 3rd. December was such a rough month for me, for Chris, for the kids, that I was intensely disappointed. At 4:30 that morning, while I was awake listening to her babble on and on, I devised my early morning email to Chief:

To: Chief

From: Boss

Subject: Partying Like it's October 2010

That would be Michaela last night. Talking incessantly with outbursts of growls and screams. Not the entire night, mind you, but enough for me to call for Benedryl.

Not to mention the afternoon of angry hollering, pushing things on the floor, and eyes wild like a cat in a cage.

Tell me again why I put her on [the psych unit] for a MONTH???


She continued to get worse each day this week. It was especially noticeable when Dr. E decided to cut her seizure meds in half. The whole point of the continuous vEEG is to capture seizure activity on both camera and computer. That info is then evaluated to determine where the seizures start, what kind they may be, how long they're lasting. If she doesn't have a seizure during the monitoring, then it's not getting any helpful information.

Well, she didn't have a seizure that first night, so in order to induce seizures, Dr. E went ahead and changed the meds to half their normal dose. But she didn't have one the second night either (Michaela usually has her seizures at night). So by Wednesday night, Dr. E decided to take away one of the drugs completely. But it did nothing---same story, no seizures. By Thursday morning, I was asking Dr. E myself if she would completely cut out all the seizures meds. She agreed. I knew we were supposed to be discharged from the Epilepsy Monitoring Unit (EMU) on Friday, and I really didn't want to go through the entire week-long test with no recorded seizures.

In the meantime, her mental state got worse and worse. She was combative, screaming, hollering, speaking unintelligently, angry with me to the point of tears. Kicking, hitting, throwing. Telling me "Noooo!". She couldn't even eat, she was talking or hollering so much. The only thing that seemed to calm her for any amount of time was the occasional Sprite the nurses would bring her.

Thursday night was the climax. She carried on like this to the point where she just collapsed. A true meltdown. I've never seen her that angry; her face that contorted in screams and tears. I got one of the nurses to sit with her so I could get some "fresh air" (ie: a walk through the abandoned sections of the hospital). By the time I got back, she was about asleep. Conked out in the same position she flung herself into--in order to get away from me.

That night, after such a horrific day, her brain exploded into grand mal seizures.


This morning, discharge day, she is back to her normal self.

The calm, polite, sweet child that we all know, was back. The turnaround was dramatic.

And pivotal.


But back on Thursday, I got my first visit from Chief.

He knew as soon as he walked in, that I wasn't happy. I couldn't fake the smile this time. It was weak, at best. I tried to act nonchalant, all business at first, but we both knew that I was not a happy camper. We had stopped acting "all business" years ago; he had become a family friend, and I couldn't hide my feelings when I knew he already could see right through my facade.

And once again, his kindness and compassion won the day. He just calmly stood there, gave me his full attention, while I asked questions he couldn't answer, and cried tears he couldn't make better. Honestly, quietly, telling me, "I don't know, Boss. I wish I did..."

We both knew I wouldn't consider putting her back on the psych unit on Friday afternoon. They weren't helping her. But what could I do? She wasn't well enough to come home, and there was nothing else he knew to do to stop the craziness. The only viable option was a residential home for mentally ill children.

And it broke my heart right there in that room... even be seriously discussing it.

I promise you, it feels like death.


He left without any answers, and no promise of any. Not that I was expecting them. I knew his limitations. He's just a man. A very smart, very kind, person; but still only human. He came back that evening to check in on us. Yet again, with no answers.

His only idea was for me to talk to Dr. Psych. I hemmed and hawed over that suggestion. Why? What good will it do? They wouldn't listen to me before...why would they start now? The ward won't change it's policies for my sake--one person! I mean nothing to them! They have their way of doing things, and I have mine...we don't mix. What's the sense?

And he nodded.

And we stared at each other, while my face was flustered with betrayal and disappointment. My eyes wide and red with anguish over the decisions I was being forced to make for my child. Because the psych ward didn't help her. Wouldn't help her. And now she would have to be away from me permanently.

I was appalled at the suggestion. As far as I was concerned, Dr. Psych was fired. No confrontation, no blame, no anger to be shown. A simple, "We don't need your services anymore." and it would be over with. I didn't have to worry about getting emotional in front of a doctor who I didn't trust enough to care about my pain, my feelings, my hurt.

But Chief was still staring at me. And I knew that if I said "absolutely not" he wouldn't push the issue. Yet I also knew that he had asked me to do it for a reason. That he was considering my anguish, and still made the request. And even though I was not interested in having the meeting, it came down to trust.

"Chief. I trust you. If you want me to talk to that doctor, I will do it. But I'm doing it for your sake, not mine or Michaela's."

"I think you should."

Trust is a very strong thing. I truly wrestled with this request in my mind, and everything in me was unwilling to honor it.

But again, trust is a very strong thing...

"Ok. I will do it."


In between meetings with Chief, Ally was very present, and showed true concern for my frustration as well. She let me vent, offered advice, made phone calls, shook trees, did research. In some ways, I know it's her job, but in other ways, you can't fake kindness. Not really. You can't fake caring. Not completely.

And I could tell by her face, her eyes, that she was right there with me. She was pulling for me and Michaela. She was invested on a deeper level than just "doing my job."

And as I've gotten to know her, I believe she does that for all her patients. Giving them a little piece of her to hold on to during the difficult and painstaking process that is pre-surgical testing.

I totally underestimated this woman. She IS a fireball. A no-nonsense kinda gal. But she's not inflexible. And she uses her bluntness and fire for all the right reasons.

She's been a true gift to me these past two months I've known her. And she's become a welcome sight, no matter the news.

That's priceless.

That's trust.


Before Chief left Thursday evening, for the second time that day, I made this statement:

"You know what I want more than anything right now?"


"I want Dr E to tell me that all this mess, all these hallucinations, this screaming, this psychosis...I want her to just tell me that it's all seizure activity. So I don't have to deal with psychiatry anymore. So maybe,maybe it will go away if they do surgery."

"Yeah....that would be awesome."


"What are the odds of that, Chief?"


"Winning the lottery."


"Yeah. That's what I thought."


This morning, I was up early. I slept like a rock after yesterday's craziness, but once I was up, my stomach was churning. Today was the day Dr. Psych and I were supposed to meet. He was bringing Michaela's therapist from the ward, and Ally insisted on being here as well. At 10 o'clock, he would be in my room.

I prayed a lot about this meeting. I just knew that I was upset. I knew that I was justifiably upset. But I also knew that there are two sides to every story, and he was allowed his. I didn't want to come across all irritable, when he may have very good explanations for what I perceived as cracks in the system. I wanted to be fair. I wanted to keep my integrity, at all cost.

But my feelings were very raw.

And every time I thought about the issues that led to this meeting, the tears were still very hot on my face.

So, once again, I asked God to come through for me. To make the journey easier. This time, I asked for something particularly special....I wasn't specific, just wanted Him to arrange things in such a way that I knew everything would pan out alright.

I just needed God to work it out. Work it ALL out. Make the decisions for me. Decide if she would go to a home. Which home. Decide if she would have surgery. How much of the seizures it would help. When she would go home. When she would get better. When I would be better.

And I just wanted to see something that told me, "this is not the end."

I wanted some hope. Because it was very dim at this point.

Partially because, to be honest, I was too guarded to allow myself any.

It's been a long 3 months.


At 9:30 this morning, Dr E came in for morning rounds. She remarked about the seizures and how she was glad we finally caught some. But what was even more obvious, was how incredibly normal and sane Michaela was. The change was like night and day.

Even Dr. E was amazed. She ran Michaela through a series of questions to see how she would answer them, and she did awesome. She could barely focus the other day when Dr. E tried to ask. And when she did focus, she couldn't even recall the correct words to say. Today, all the answers were right. Even her eyes looked different, better.

She then turned to me and smiled. In this scholarly way she does, when she's about to drop a bomb's worth of insight...

"So, I'm going to tell you, that this just proves that all this hallucinating, all this psychosis is directly related to the epileptic encephalopathy."

My brain didn't absorb the statement at first, although true to form, there WAS a bomb in there. I have heard "epileptic encephalopathy" for years. It simply means a disease process in the brain, caused by epilepsy, i.e. seizures. We used the term a lot more when she was younger, when she always seemed to be in a stupor of some magnitude. Epileptic encephalopathy was the big, bad reason for it.

And here she was referring to it again.

"Dr. E, could you rephrase that? Are you saying that the psychosis is actually seizures?"

"Yes, it is seizure activity."

"So she doesn't have a separate brain disorder. She's not psychotic, she's having seizures."


In other words..

...I had just Won the Lottery.



I was visably celebrating after she told me that. Personally, I had always felt like it was the case, but I could never get any positive vibes out of anyone else to confirm my feelings. I had actually been told that it was all a part of becoming a teenager; that teens just get moody and difficult.

Ok, I could accept a little of that, but this was way overboard.

And then when Chief tested the WHAZOO out of her in the middle of Nov, trying to find some underlying condition, with no success at all, we were even more discouraged. It looked to everyone as though Michaela's brain had just given up trying to function properly. That she was in brain failure. It seemed the most likely cause to me once I heard it, because I knew how much she had been through over all these years. Why wouldn't her brain just decide to call it quits?

Who wouldn't go loopy after 10 years of harsh drugs and endless, destructive seizures?

We had already seen her throat do the same thing 5 years ago. It just up and decided that it wouldn't work right anymore. This is why she has the G-Tube. Because even though she can swallow most days, if the seizures get bad, her throat just up and quits working. Totally goes on strike.

So I could accept the concept of her entire brain pulling the same stunt.

But I truly wished it weren't true. I just wanted it to be another type of seizure. Even if it was one they hadn't seen often, or ever. I am used to seizures. I can handle that explanation.

Later on in the day, Chief came in to see us. I had emailed him about my future meeting with Dr. Psych, and a possible solution that I felt would be better than putting Michaela in a mental facility. But I needed his approval for the plan.

Yet now that I had this news from Dr. E, my game plan totally took a backseat in the conversation.

I lit up when I saw him, "Chief! Did you hear our good news!?"

He looks around the room for an obvious answer, "Uhh nooo. What's up?"

"We won the lottery!"

"You did?!? Are you buying a bigger house???"

"Chieeeeeeef! Not the real lottery...! Dr E figured out that the psychosis IS seizure activity!"


"Are you serious?"


He raised his arms in victory, "Alright, Michaela!"


After all this good news, my pending discussion with Dr. Psych just didn't seem that big of a deal anymore. Sure, the situation was still very much the same: I still had a child who had not been controlled well enough to come home. However, just the fact that she wasn't a true psychiatric patient, took a huge load off my shoulders. She is strictly a neurology patient, and psych only gets involved so we can add different meds (beside seizure meds) to help control her. And I knew that she wouldn't need to be in the psych ward or in a home to do that. That we could just go back to a Cube or whatever, and tweak the meds there. Even do some tweaking at home if we found a good combination.

That even though it might take some time to do it, she wouldn't have to be away from me.

And from what the psych doc said, these drugs SHOULDN'T take a long time to show if they work (that's anti-depressants, not anti-psychotics). We had already proven that out in Nov when we changed them, and she would switch within hours or days. Unfortunately, she always seemed to go back to psychotic stuff after a week.

BUT....we had really only tried ONE med.

And that was a point I stood on. Since when do we give up after only one med? We've tweaked the fire out of that med: dosing times, dosing amounts, switch switch switch. It never helped bring her home.


Duh. This is so simple.

But we tweaked that irritating med for 9 weeks. And I was DONE with it.

So, out of the various things Dr. Psych and I talked about, the only thing that really mattered to me was this:

Will you allow us to use you as a consult, if neurology admits her for psychosis? Will you help us tweak the meds on a regular floor under neurology's service? Will you stand behind us trying another drug or two until we make this work?

I got a yes on all three counts.

The rest of my frustrations and anger and irritation melted away.

Because really, when it comes down to it, Dr. Psych was no longer a major player. No need to even "fire" him. We were back in Chief's care.

And I was back on my home turf, physically and mentally.


Before Dr. E left after rounding this morning, she decided that Michaela would stay through Monday morning. She was just starting to get the good information, and she didn't want to stop yet.

So between Dr. E extending the test, Dr. Psych (or some psych resident) agreeing to work with us off the psych floor, and Chief agreeing to admit her under neurology, we have a new game plan.

If she starts to ramp back up into psychotic seizures by Monday, then we will readmit her as a neurology patient, and keep messing with the drugs. Now that we know what we're dealing with...what the problem is, we will feel more comfortable playing with the meds and getting the job done.

To get her stable.

To bring her home.

If she stays stable enough to be dischargeed on Monday, then she and I will stay at the RMH for a few days--just to be sure. And if stability continues, we will be coming home. Even if we have to readmit with Chief, it may not take as long as we used to think it should. We could be home very soon.


It seems too good to be true!

Thank God for special answers to prayer!

For working it "all out!"

Like He always does...

...Preserving my trust.