Monday, December 06, 2010

Time Changes Nothing. And Everything.

Michaela’s psych med was increased on the 20th of November. Because of her recent history with EVERY drug change (how she crashes after a few days), Chief and I agreed that it would be best if she wasn’t discharged until we gave that change a good week to show it’s true colors: either good or bad. And since the 7 day mark fell on a Saturday, and he was going to be the Attending the following Monday the 29th, we agreed that that day would be a good day to discharge, if she was good.


But she wasn’t.


Well, as far as psychosis goes, she was better. Much better. No more screaming or throwing things. No more hollering out the window to unseen people. Right after the drug change, she would get angry with me more than usual, but that went away too. If she did anything kinda weird, it was some inappropriate silliness or weird voice, but that was something I could live with.


Where the problem lied, was that she slept.... All.The.Time. Up to 20 hours a day. She’d get up and play for 5-10 minutes, and then back to bed. She’d wake up to eat, and then right back to bed. She’d be awake, but with her eyes closed, laying in her bed and refusing to open her eyes or get up. If you asked her if she wanted to go somewhere or play with something, she would say, “No. I’m sleeping. I don’t want to get up.”


Her quality of life was just not where it needed to be. Sure she was calm, but she didn’t have any fun, any happiness, any LIFE. If we went home with her like that, she wouldn’t have been able to go to school (which she loves), or stay awake for Sunday School, or even tolerate being with the family at all. It was like she was depressed, at the very least.


As much as the psychosis wasn’t good, neither was the incessant sleeping. Something had to be done to get her more even keeled.


****


So when Chief came back on service on Monday, I had a bit of anxiety about the discussion we would have. I felt bad to complain about the sleeping. Especially since it was so much nicer than the screaming, AND he said that it wasn’t anything to worry about as long as it didn’t go 24 hours straight.


But I knew she could be better than that. I was willing to go home, if that’s what he wanted to do (seeing as how we had been here for 5 weeks with only a 2 day break), but I wanted him to tell me when we could try to fix the drug doses so she would stay awake. I was also concerned about some testing she would have done on January 3rd, where she would go through something similar to a 6 hour IQ test. I knew there was no way she could handle that in her current state.


On top of that, she didn’t have the greatest day on Sunday. Some of the worrisome behaviors that had escalated into mania a few weeks before, were creeping back in. She also went back to sleeping a whole lot. The nurses didn’t notice it, visitors wouldn’t notice it, but I sure did. Was I on Lava Alert? You bet. And I had every reason to be, too.


How could I NOT be, when every other time, my gut instinct was spot on? I may not have an M.D. after my name, but I sure know Michaela. That had been proven out.


So anyhow, he came in with the team (including Michael, the resident who’s been around since all this started), and the first thing he asks me is, “So how were her last 4 days since I saw you?”


I had already decided that I would take the short and concise approach. I wouldn’t act overly concerned either way. I would just let him think and do what he wanted to do.


“Well, I wasn’t here Thursday (Thanksgiving), Friday she slept all day, Saturday was a great day, Sunday wasn’t that great, and this morning she had a 20 minute conversation about someone out the window during breakfast.”


He sighed and turned his attention to Michaela.


She had already put herself back to bed and was sleeping pretty soundly. He crouched down to where he was eye level with her, since she was sleeping on her side. He opened one of her eyelids. Then he quietly spoke to her:


“Hi, Michaela.”


Nothing.


He rubbed her face, patted her back, opened the eye again.


“Hey, Michaela. Will you wake up for me?”


Nothing.


He put a little more force into it, gently shaking her by the shoulder this time. When that didn’t work, he watched her face while he put some force on her nailbeds (which is painful), hoping to see an instinctual jolt away from the pain or a grimace; or better yet, hoping she would wake up.


She pulled away, but didn’t open her eyes.


“Oh, Michaela. I’m going to have to get mean if you don’t open your eyes.”


He waited a moment, then reached down and got a good hold on her toe. And although I couldn’t see from where I was, I assume he used the same maneuver, but with some more force. This time, it got the desired effect.


“Ow. That hurts.”


“I’m sorry. Will you come talk to me?”


Sleepily, she slowly rose up to a sitting position, “Yeah.”


Once he got her up, he dug into his black doctor bag (yes, some doctors still use them), and got out his stethoscope. I had NEVER seen him use one before, or even have one hanging around his neck or anything. It was peculiar.


After that, he grabbed a reflex hammer, which I had seen him use a time or two before, but Michaela was much younger. After going through all the different spots, he focused his attention back on her wrists and elbows. Using both hands, he would move the joint, back and forth, back and forth. It was obvious from the force he was putting into moving her arms, that there was something a bit different about them. Some resistance. He kept going back and forth from one joint to the other, testing the movement.


He looked at Michael, his resident, and without speaking, gave him a knowing look that said, “See this?”


After the joints, he had her stand up and walk. First one way, then the other. She complied easily, but didn’t speak. Instead, she yawned.


He stopped her and turned her so that he was behind her. I thought he was trying to see if she was steady on her feet, because he circled his arms around her (without touching her) to make sure he would catch her if she fell. She stood still and stable after a brief moment.


Then he did something I completely didn’t expect.


He quickly went from circling her with his arms, to smacking her on the front of her shoulders with both of his hands. He used enough force that she would fall backwards towards him.


“Whoa! Whoa!” Michaela yelped, as she stumbled back and tried to regain her balance and stand upright again.


Chief looked at Michael and winked.


He did it two more times, and each time she did a better job catching herself quicker. He seemed satisfied that he had gotten a good picture of where she was at, and let her sit back down on her bed.


He turned to Michael and sighed. “I think she’s got some rigidity. We need to talk to Psych and get their opinion on this. And I also want a routine EEG, ok? That’s what we’re going to do today,” he turns to me, “Ok? That’s what I want to do today.”


“Ok. What is it that’s wrong?”


“I think she’s showing signs of Parkinsonianism. The stiffness in her arms is a side effect of the psych med, and I want to make sure Psych weighs in on that.”


Even though he didn’t say it, I imagine he was recalling how she responded to the first psych med he put her on at the end of Oct. That drug would cause her to “freeze” for five minutes after she got a dose. Blood work showed that the drug was NOT reacting well with her system, and they needed to take her off of it immediately (ie: the word “deadly” was used). The slight rigidity she was experiencing with the newer med, could be a precursor to the problematic freezing she went through a month ago.


So Michael put the orders in with the nurses, and they turned to leave.


Not one word was mentioned about going home.


****


Dr. Pannel, the Pediatric Psychology resident, came in later that day. He asked all the usual questions, including ones that just didn’t apply to Michaela (ie: has she ever acted suicidal?). We discussed the excessive sleepiness, the rigidity, and another sign I kept seeing: an incessant thrusting with her tongue.


During the course of the conversation, however, Dr. Pannel said something that really made things clearer for me. He said that sometimes, when a person just can’t seem to tolerate meds well, or continues to have neurological problems despite therapy and treatment, they describe the problem as “brain failure.” Most people are familiar with “heart failure,” “kidney failure,” or “liver failure.” But the brain is an organ just like the others, and it can have the same overall problems that the other organs experience. In any case, it’s not so much that the organ will “fail,” per se, but more that it is struggling to function normally. It’s level of sensitivity skyrockets, and you just can’t do anything very fast or aggressively because that organ will just up and quit completely. Michaela’s brain is acting just like that. Every little change is throwing her brain into a crisis. And in order to keep it from getting damaged in a big way, we have to take each step carefully, slowly, conservatively. That just made a whole lot of sense to me.


After we talked, he examined her himself, and also noticed the rigidity in her wrists. He wasn’t sure about her elbows, because she wasn’t allowing her arms to relax enough. But he brought his Attending in to see her, and he was able to feel it. Between the two doctors, they hemmed and hawed over her case and what the side effects meant (some of the side effects were appearing much too soon, some much too late). By the time they left, they had decided to try to change the psych med from twice a day, to 3 times a day. AND they lessened the dose.


Which definitely made me nervous.


****


The next day, Tuesday, was the BEST day Michaela has had in a long time. Maybe even the best since all this started two months ago. I just really felt like I had my kid back. I took her out of the room to go play with some toys at the Children’s Harbor (a type of YMCA for kids, attached to the hospital), and she enjoyed it immensely. Allyson (Dr. E’s coordinator) found us there and could not believe how good she looked. She just kept staring at her with her mouth gaping.


I felt the same way.


On Wednesday morning, Chief was out sick and when Dr. Head Honcho came through asking about Michaela, I was quick to tell him that if Tuesday was any indication, that I felt we had hit our “magic number.” That morning, she again woke up and was normal. So after breakfast, I took her back to the Harbor, thinking she would love to just get out of the room and play with different toys. She did great there. She found a toy she loved (of course, music was involved), and just sat there and played with it over and over. She would answer questions, and make comments about the toy, and just did beautifully.


We ended up leaving so she and I could eat lunch. After she ate, she promptly put herself to bed to take a nap. It wasn’t like the past week had been, where she was sleeping all the time, but just a normal reaction to a busy morning. She’s always been a napper.


In the meantime, Allyson came back into the room to update me on some more test dates. She asked about her day, and if it was just as good as yesterday. I enthusiastically told her how excited I was at her apparent change of mental state. She had been doing well enough for me to actually think about asking to go home. Even the EEG showed that her seizures were well controlled--just the typical spikes that we see when she has that test. Abnormal, yes, but normal for her.


As we were talking, Michaela woke up.


Almost immediately, she started hallucinating.


In an attempt to disprove what we knew was happening, Allyson and I kept trying to find a logical reason for what she was “seeing.” Michaela kept referring to a person outside on the roof, describing how they looked, what they were holding. Ally would look out the window to see if there was something, anything that even remotely resembled what Michaela said she was seeing. There was nothing.


Since she is technically a nurse, Ally ran her through a series of tests (“Michaela, look at me, squeeze my hand”) to determine if she was having some sort of weird seizure (at least, that’s what I think she was doing). Once she was satisfied that she was, in fact, hallucinating, Ally just sat there and watched her. We both did.


I said, plaintively, “I was going to ask Dr. Head Honcho if he could send us home tomorrow....”


Sighing, Ally looked at me, “I guess she needs a few more days....”


I stared at her, crushed.


“Ally, we’ve been dealing with this for 2 months.”



I don’t know what a few days are anymore.


****


Michael was paged and about 45 minutes later he walks in the room. Michaela was no longer actively hallucinating, but she was buzzing around the room, muttering about alligators and random nonsense. She would press buttons on the wall, smack the windows, pull out the bed, tear off the sheets, throw her doll. All the while, blubbering about things that made sense only to her.


He brought up how she’d only been on the new dosing schedule for less than 2 days. Maybe she just needed more time.


I brought up how the change worked within hours, and she stopped sleeping. It was already working....just in the wrong way.


He thought maybe she needed to get out of the room more; that perhaps she was tired of those “four walls.”


I reminded him of how I took her to the Children’s Harbor 2 days in a row. If she was agitated from the seclusion, it would’ve happened last week, or the week before that. Not 42 hours after a drug change. And definitely not after we had just gotten out finally.


He had no answers after that. And I didn’t expect him to.


So I told him that I wanted to admit her to the psychiatric ward. I wanted that team of doctors, therapists, and nurses to have complete access to her. Not only to see what I was seeing--even the subtle things--but to address the problem head-on and tackle it once and for all.


He agreed to talk to Dr. Head Honcho.


The next day, she was moved out of the care of Neurology, and into the direct care of Psychiatry. She now had a room on their floor in the hospital.


I, was now walking unchartered territory.


****


It has now been a week since that fateful last drug change. Michaela has been on the Psychiatric Unit for almost 4 days.


I am barely allowed to see her. Not much more than an hour a day on the weekdays.


When I go up to the unit, I take a non-descript elevator that is in the bowels of the hospital. When I get to the correct floor, it immediately looks like I pressed the wrong button. The elevators open into a small room with a few chairs, two windowless doors, and a set of lockers. Restrictions are framed and posted on every hand.


“No weapons allowed.”


“Only Authorized Visitors Will Be Permitted.”


“Please Press Call Button and Wait to Be Spoken To.”


If I want to see my daughter, I must do as I’m told, so I press the button and wait for the powers that be. They squawk back through the speaker, and I strain to understand what’s being said. Because I really want to see her, and they are the gatekeepers.


“Who are you?”


“Kelly Morris, here to see Michaela Morris.”


Pause....so they can see if my name is on the sheet of “approved visitors.”


“What’s the Code word?”


After rattling it off, since I know it as well as my own name, the interrogation goes further:


“Do you have anyone with you?”


A question I find humorous, since I know there is a camera staring right at me and the entire room, which they are looking at as they ask me that very thing.


“No.”

“Do you have anything that needs to be locked up?”


“Yes.”


I say ‘yes’ because I know I’m not allowed to have my keys, my cell phone, my computer....


....my dignity, my parental rights.


Since I have contraband on my person, the guard comes out to lock my things in the lockers. After unloading my pockets, he proceeds to use a wand and screen me, TSA style, from top to bottom.


I doubt visiting a known murderer would be any more violating.


Michaela’s new room is stark and sterile. There is nothing that could be broken and used as a weapon. No door knobs, faucet handles, tables, even the toilet is constructed differently. There is no toilet paper holder. Any heat that comes in the room, can go almost no where. The cold floors, hard surfaces, and empty walls cannot hold it in or soak it up.


She lays in the bed, curled up beneath her blankets and holding the latest toy subject to her delusions. There is toothpaste dried in the corners of her mouth, and spaghetti sauce in the edges of her fingernails: the staff’s attempt at parenting. Her hair is a tangled loop of someone’s best intentions and fear. She is dressed in standard issue scrub-style clothes that are too big for her.


They are dyed a sorrowful version of “Kelly green,” and the irony is not lost on me.


I sit on the cold plastic chair and watch her sleep. Although I haven’t asked directly, I know that I am not allowed to leave her room with her and go sit in the more comfortable living areas they have. If we want to visit, that’s where it has to happen---in that stark, bleak place.


So I sit.


And I stare at what has become of my oldest, my first child.


Trusting God to change what I cannot. What Chief cannot. What time has not.


And knowing that Trust sometimes means...




...that I don’t get what I want.




Including answers.


Thursday, November 18, 2010

Hospital Antics: Hurry Up and Wait

Day 4 of Chief's rotation on service, and we're back to square one: nothing.


The redo of the Thyroid levels came back normal.

The redo of the ANA panel (Lupus) came back negative.

The spinal tap came back negative.

Vit A and Folate deficiency tests: normal.

Plenty other miscellaneous tests: normal.


There are still some other Vitamin deficiency tests we're waiting on. Maybe they'll be back tomorrow.


But I'm not holding my breath that they will give us any clues. Sorry, but the disappointment happens too often. So yeah, I'm guarding my excitement of any answers tomorrow. I guess I'd prefer to be pleasantly surprised in this instance.


In the meantime, he has upped her Depakote levels to a whopping 120mcg/mL (normal ranges are 50-100). That started this morning. I must admit, I was originally somewhat irritated over the med change. I felt like Chief was doing nothing but masking the symptoms of an underlying problem. And when you mask the symptoms, it's a whole lot easier to ignore the issues. Kinda like, "out of sight, out of mind." Over the past 3+ weeks, there's been a whole lot of that going on (to the doctors' credit, it wasn't intentional), and I'm not interested in any more of it.


But he made a good point: there's nothing wrong with treating symptoms, as long as you also try to fix the underlying cause. For example: it would be terrible negligence to give a kid with a broken arm some morphine for his pain, without resetting the arm. And truly, the opposite would be true as well. The two CAN go hand in hand, and should. But in my frustration, I was tired of seeing her symptoms addressed, and not the "why" of it all for the past month. So, I originally preferred to ignore the symptoms, just let them run their course, and keep them front and center. Because you can't ignore a kid that screams all day, but you can feel a whole lot more comfortable with one who just lays around. And I didn't want her to be ignored or overlooked again.


Why I felt this way, I can't say for sure. I'm most likely paranoid, frustrated, feeling in the dark.


Tired.


And to act like Chief's not doing an insanely incredible job of trying to help Michaela, would be completely unfair and disingenuous of me. He's NOT ignoring the underlying problem. It's just the cause of all this is NOT obvious in any way, shape, or form. Couple that with the fact that he's as much a victim of the system as Michaela and I are, and it looks like we're doing very little. We run labs, and we wait. They come back fine, we run more labs, and we wait.


Every day....hurry up....and wait.


I still feel like we're exactly where we need to be. I still feel like she's getting the best care in the world. Yes, the WORLD. There is not another doctor on this planet that knows Michaela like Chief does. There may be smarter doctors (he would say so himself), or more experienced doctors (take Boston Children's or Johns Hopkins, for example), but there isn't another doctor out there who has the advantage of KNOWING Michaela over the course of 6+ years of difficult-to-treat epilepsy than Chief. He knows the intricacies of HER. The little nuances and the normalcies. I KNOW she's in good hands medically. I have utmost confidence in her care.


But he's right. The symptoms needed to be treated. It was obvious on Thursday the 11th when she had the grand mal seizure clear out of the blue. She was having one of her hissy fits, when she just slumped over. That just doesn't happen. But it was a sign that she was physically growing tired of the constant intensity of the psychosis. I was worried about that. Worried that her body would just start going into constant seizures again---from the stress.


So, I guess he made the right decision. That's why we pay him the big bucks :)


****


I left the unit about 11 to go spend a few minutes with some friends, and grab a bite to eat. I also had been invited to share my story with the board of trustees for the Ronald McDonald House at 12:15 or so.


It was slightly unnerving, standing up in front of all these very nicely dressed, executive types. But it went well, and I was given an ovation :) I had several members come and speak with me personally after the meeting, thanking me for sharing and for giving my input. One lady in particular, has a son with a seizure disorder as well. She mentioned that her family owns a shop in the Huntsville area, and that I should feel free to use her name any time I went there....that they love to adopt people. I guess I've been adopted :)


The man responsible for the Birmingham house, Mr. Max Cooper, came and shook my hand and thanked me for telling my story too. He is very old, and very kind. To be honest, I didn't think Mr. Cooper was still alive. His bust is in the foyer of the house, and I just assumed he had passed away. Well, I was very glad to be wrong. He is a wonderful person with a heart for sick children. It was a pleasure to meet him, and tell him why I'm so appreciative of the House.


****


Come to find out, while I was gone, Michaela had her worst day in a week. She screamed for 3 hours straight, from 11 to 2. She finally knocked out, but when she woke up this afternoon (about 3pm), she went back into a psychotic episode. Here's what she did...


video


The nurses tell me that she was 3 times louder and more intense during the 3 hour stint earlier. Hard to believe, to be honest. My ears are hurting pretty good from the current session!


I guess, when it comes down to it, there's no masking of the underlying problem going on. Increase of drugs or no....she's still pretty messed up. There's no denying it.


So we'll test some more....and wait.

Thursday, November 04, 2010

Hospital Antics: Roller Coaster Thursday

WHAT A DAY!!!


Of course it all starts with morning rounds. We (Aunt Becky Knox and I--she's been staying with me this week) got there before the neurology team. I was very anxious to see what Michaela was doing after my red flags from yesterday. She was sitting up in bed and eating. A very normal thing to do.


Overall, she looked pretty good. Talked good, was eating ok. Again, nothing overly outrageous that anyone would notice. My heart kinda sank, to be honest.


See, cuz here's the deal: Once she starts to show red flags, I lose any sort of trust in the med. Ideally, I would prefer her to go on a drug, and there be NO red flags at any point after she gets on it. Because once flags start, they generally play out into something that gets worse and worse. Almost without fail. Not that there can't be exceptions to the rule, but we just haven't experienced exceptions too often.


So, here I am, totally disillusioned with her new drug regimen, and she looks ok again. Which leads to questions: How long will she be good? Will she crash in three days? Five days? 2 weeks? Or will she just settle down and do better? Or are these red flags the things we just need to live with?


And I know no doctor can answer any of these questions. I'm just telling you what runs through my head.

Remember, I've gone through this before. Even with the very first med she was ever on. We're talking a 10 year history of deciphering red flags. I've gotten pretty accurate at it.


But here comes Dr. Head Honcho. All bright and cheery (he really is a great guy), and says "Hello!" to Michaela, and then proceeds to ask me the question I'm dreading:


"So, are you ready to go home?"


****


Do y'all realize the problem is not going home?


The problem is shifting from one reality to another. There are two realities for me: home and hospital. Because when you're in the hospital, you live here. Even for only a day or two, you're living here. You eat here, shower here, sleep here--it's your immediate life. You have to mentally acclimate yourself to the new surroundings and "family", just so you can feel comfortable and ready for what you need to face.


Keep this in mind as well: it is EASIER to care for her in the hospital. So in that regard, I'd be more UN-comfortable in my home surroundings when she's medically fragile. Especially with a condition like severe epilepsy where there are so many subtle problems. I mean, MOST of her seizures are not visible to the naked eye. When she was in status on Monday morning, she looked like a sluggish, sleepy kid. That's what you would've thought.


What I saw, were unseen SEIZURES.


So, please don't think that I don't want to go home; that I don't want her to get better. No, that's not it. It's just that I don't want to go home again with her "not right." Because it means I could be home with her for maybe a week, before I have to turn around and get reacclimated to the hospital again.


Last time we went home, I didn't readjust to home for over a week.


Physically, I don't think my brain and body can handle that readjustment again...

...without knowing we are staying put for a long time.


****


"No. I don't want to take her home today."


"Why?" says Dr. HH, completely startled.


"Because I'm seeing things that give me the impression she is slipping back into a problem. Last weekend, I saw some of the very same things, and against my better judgement, we were discharged. Within 24 hours, we were readmitted, and could've been back in hospital with a FEW hours if I had pressed the issue and hadn't stayed in town overnight. I DO NOT want to make that mistake again. I need another day to see how this pans out."


I went on to explain to him the red flags I was seeing, as subtle as they were, and he agreed to allow us to stay one more day.


****


I totally agonized over that conversation for the rest of the morning.


Maybe I was making a mountain out of a mole hill. Maybe I was seeing things that just weren't a big deal. Who am I to tell the Chief of Pediatric Neurology at the "14th BEST Children's Hospital for Neurology" (according to the US News and World Report) that his judgement isn't right? To go against his recommendation?


If that doesn't make you feel like you're playing t-ball in the major leagues, nothing will.


And it frustrated me to no end during the day.


I just wanted her to SHOW everyone what I was seeing, you know? I'm so tired of having to analyze every thing she does in order to let the doctors know what's going on. I mean, they never ask HER what's wrong....always me. I have to get this right. But what if I'm wrong? And why does it always feel like I'm seeing things they aren't seeing, until it smacks them in the face??


I finally came to the point where I was just like, "I don't care." So what if we go home. I'll be home for 3 days, and then she'll be unresponsive, and then I'll call Chief and tell him how bad she is, and he'll tell me to up some drug, and then it won't work, and then we'll have to go back in for another 10 days to knock her out of it.


Next verse, same as the first.


A little bit louder, and a little bit worse.


Sigh.


****


But you know what?


Red flags don't lie.


By 7:15 Thursday night, she was psychotic again. Talking to the wall, talking to her arm, making no sense, thrusting her tongue. She went from 0-60 within minutes. It was that quick.


Every red flag I saw proved itself out. They were the precursors to the plunge she took hours later. They may have been subtle and seemingly nothing, but they switched into that awful psychosis that brought us here on Oct 25th.


And by the time it showed up....I would've been home for about 5 hours....if we had left.


****


But in the midst of all these mental battles and frustrations and struggles, there was prayer.


You didn't think I was leaving that out, did you? :)


And yes, I DID pray that she would get worse, and they would know it. Yup. I did. Because like I said, even if I had asked God to make her better and take away the red flags, and He did, that doesn't take away my lack of trust in the meds. Once they break my trust, in my humanity, I can't get that back. I will constantly be on Lava Alert for the problems to rear their ugly head again. It would take months and months of no red flags for me to feel like we're out of the woods.


And truly, that's rough on my mind.


So, it was my preference to get rid of the current med setup NOW, while I was not trusting it, and start over with a drug that wouldn't wave any flags.


I'm not saying it's good thinking, right thinking, solid thinking. It is just MY thinking.


And God knows me. He knows how my brain works, and how I get uptight about these things. So for me to ask Him to let her fail the drug full-force (instead of just "maybe" failing the drug), so we could start over, and THEN pray that the next regimen would be problem-free, isn't something that would phase God. And it really works better for me.


So here's where it gets pretty cool:


Last Sunday night, when Boo and I were at the RMH, and she had gone status, I prayed for 4 things...

1) That the doctors would see the problems I was seeing.

2) That they wouldn't send her home like this without a VERY convincing explanation.

3) That God would allow this hospital visit to be worth something: that we'd get somewhere in furthering the pre-surgical testing (even though I was told it wouldn't happen).

4) That any pre-surgical testing from here on out, would show them what they need to see to give her relief from the seizures.


And the very next morning, God answered the first two.


Yesterday, I prayed the same way--those 4 things, and really believed God would allow us to stay in the saftey of the hospital until she was obviously (to ME) doing well.


So, even though I was frustrated all morning with how no one, but Becky and I, could see those red flags, I still had that prayer in the back of my mind. I also knew God had answered it just a few days before with the other situation. And I also knew that God answering prayer doesn't mean I just sit back and let it all unfold.


Which is why I told Dr. HH that I wasn't going home until Friday.


The doc could've said no, y'all. God could've allowed it to work out that way.


But He didn't, and when it came down to it, God allowed her to show her true colors within 12 hours.

THAT, my friends, is an answer to prayer.


OH! But it gets BETTER!


****


Remember Alyson, the epilepsy surgery coordinator? She came back after Dr. HH and his team finished their rounds. She told me that we were still in a holding pattern as to which test we would do next, because Chief and Dr. E still needed to touch base on it today. She said that she would get back to me on that sometime today (which was yesterday), but that Dr. E was completely booked up until after the first of the year. Did I have any major plans after the first of the year?


(Ummmmm...NO. Are you kidding? I wouldn't be busy and miss this testing for nothing!)


I told her my schedule was free and that the beginning of the year was fine, and that I was just glad we were moving in the right direction.


About 2 hours later, here comes Alyson again.


But she's not alone.


With her is Dr. E, and she wants to talk to me.


(Hello? First of the year? Whoa!!!)


Dr. E. introduces herself, and proceeds to tell me that she's been talking to Chief, and she's been looking at Michaela's records and previous tests. She tells me that she wants to get to know Michaela better, learn more about her and how she works. She wants to set up some testing with a Neuro Psychologist, to show her which parts of her brain control the other parts of her body and her thinking patterns. And she started to talk about the various tests she wanted to do before they could compile all the data, and determine if Boo will be helped by surgery.


Then she goes on to say this: "However, I know you don't want to hear this, but...."


And I'm thinking, She's gonna tell me that she's pretty sure she can't help Boo. That it's a huge long shot.


"....I know you've done a gazillion EEGs, but his way is more precise...."


And I stop her there. "Wait. Excuse me, but are you thinking I don't want to hear you tell me we're doing another EEG?"


"Well, I know you've done so many of them...." (Yeah...4 this month alone!)


"Oh Dr. E! I could care LESS about doing another EEG! I thought you were going to tell me that you don't think you can help Michaela!"


"Oh NO!" she says, "I just didn't think you'd be happy about redoing that test. I don't know that I can help Michaela, but I certainly want to try! Don't worry about that!"


And would you believe, a few moments after this conversation, she told me she cleared her schedule, moved some patients, and is starting that specialized EEG tonight (Thursday night)???


Answer: prayer request #3!!!


****


I couldn't have been more over the moon.


But I know you don't see it yet, the big picture: her putting Michaela in the EEG Monitoring Unit (EMU) for the weekend answered TWO prayer requests: that we wouldn't have to go home before they could see the red flags, AND that we would further the testing.


See, I told you about how Michaela's red flags turned into psychosis, BUT I told you the story out of context.


Dr. E put Michaela in the EMU for testing BEFORE Boo started going psychotic again. So, when we got the news that Michaela was staying the weekend at least, I was still agonizing over going home on Friday morning with her only showing subtle red flags (and therefore potentially coming back to the hospital within a few days).


It felt like I got the reprieve we needed! Yes! I thought, surely, if the red flags are a problem, it'll show up in the next 3 days while we're here for testing!


I felt an immediate wave of relief. A total rush.


It was a double miracle to me. Two answers to prayer, in one fell swoop.


Don't tell me there's no God!


****


And on top of that, while I'm eating lunch and totally still in awe at the change in plans, I notice I have a voice mail.


It's Alyson.


"Mrs. Morris, I just wanted to ask you how your schedule is in Dec. I know you said you have a trip then, but I moved some things around, and got you into the PET test for Dec 13th...."


Oh wow! Wait....call waiting.....


It's Alyson.


"Oh hi Alyson! I was just listening to your voice mail! Dec is fine!"


"Actually, Mrs. Morris, disregard that. I juggled the schedule and I have an opening for Nov 22nd now. Will that work for you?"


(Ummmmm...NO. Are you kidding? I wouldn't be busy and miss this testing for nothing!)


Deja vu!


She then goes on to tell me that she called the Neuro Psychologist to schedule that test with him, but he's booked until January. She said, "That's just not acceptable, so I'm going to have to do some more finagling, and I'll get back to you on that."


Wait, since WHEN is January "not acceptable?" I said January was perfectly fine, but obviously, SOMEONE else doesn't think so.


This whole process is being PUSHED.....FAST.


I think you can draw your own conclusions ;)


****


And THAT, my dear friends, is another day for the record books.


And another check in God's column ;)