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 ;)