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.
Ummmm...no. 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:
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.
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...
...to 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.
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.
SO CHANGE THE MED.
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.