***I worked on this late Monday night, and it turned into Tuesday, so keep that in mind as you read. This info is really in regards to Sunday and Monday****
An interesting day, that really started yesterday....
Yesterday morning, Boo was really sluggish. She was herself, so to speak, but just kinda lethargic and droopy. I got her up and dressed and eating pretty early. She pottied. She got to coloring. But overall, I just didn't feel "right" about her. Over the past two days, it seemed like she was slipping back into the realm of "bad." Not the bad we came in for (mania etc.), but the bad I had seen at the beginning of October and that kept us in hospital through 10 days.
But Dr. Attending saw her and was pretty glad to see her coloring and doing normal kid stuff. I knew that was going to happen....she doesn't really know my kid. And truly, it wasn't anything overt; nothing that would smack you in the face as being "bad." Let's just say I had a feeling something wasn't right. The whole picture looked very much better, but there were some nagging red flags...subtle things...that I kept noticing that bothered me.
Now, because they were so subtle, I mentioned maybe one thing to Dr. Attending, just to feel her out. If she blew it off, then I wouldn't mention anything else and just kinda go with the flow of what she wanted to do.
She blew it off.
And really? In her shoes, I would've too.
So, I kept my mouth shut overall, and listened to her reasoning for sending us home. She didn't want Boo to get sick from hospital germs, she thought she would improve in her own surroundings, she didn't feel like there was anything else to do right now, she knew I had a family to return to. I agreed with her on every point. But I made this one: I did NOT feel comfortable leaving and going home without an EEG to solidify what her brain was doing. She had been through the wringer with meds, and was completely off a drug that kept her seizures at bay. I wanted to KNOW that EEG was stable. Because I truly felt it wasn't.
So we compromised: Boo would be hooked up to an ambulatory EEG at 4 pm (an EEG in a backpack that she carries with her), and we would be discharged to the Ronald McDonald House until it could be read the next day. Dr. Attending would come in early to read it, and we would know for sure that everything was doing ok. Then we could go home.
We left after Michaela ate her lunch, planning to come back for the 4pm appt. It was a gorgeous day; mid 70's and sunny. We walked the 2 blocks or so to the RMH, and she went straight to the toys. We found her the Magna Doodle they have hanging around, and she spent some time doing that while I ate my lunch.
I kept looking over at her from where I was sitting, and after a little time, she was just sitting there, staring at the doodle. So I went over to check her, and she wasn't playing with it, but just staring at it. I asked her what was wrong, and she just said, "I'm looking at it." Well, she looked tired to me, but since she was content, it didn't matter to me what she did.
After just a few minutes, she slumped over where she was sitting. Sure enough...she had seized.
The red flags don't lie.
*****
I moved her over to a couch so she could continue to sleep, and she had two more seizures that I could see. But we still had to go back to Children's to get the EEG at 4, so when the time came, I put her in the RMH wheelchair and wheeled her out.
I got her in the car, over to Children's, into their wheelchair, up to the second floor (on which she slouched so bad, her feet were dragging), into the EEG bed, all the leads scrubbed onto her head, back into the wheelchair, back into the car, back to the RMH, back in THEIR wheelchair, back to the couch...
....and she never woke up.
And you tell me there's nothing wrong with this kid? I think not...
She finally woke up between 7 and 7:30, and it was obvious to everyone around that she was "gone." She stared and didn't respond. She drooled. She flopped.
I wheeled her up to our room and got her into bed. She fell asleep again by 8:30. And proceeded to sleep like a ROCK. I mean, she really didn't move all night. No seizures that I could tell (unless I slept through them, which is doubtful, since I was on alert). I kept feeling her back to make sure she was still breathing. I'm talking many times during the night.
And I got to thinking: "Well this is bizarre. Here she is sleeping so GOOD, yet she was obviously slipping earlier."
And this morning didn't help my intuition either. I woke her up (which wasn't easy), and she proceeded to talk to me like she was fine. Sluggish, but fine.
Arg.
My red flags are hiding....
...but red flags don't disappear, normally.
****
Back in EEG, the flags started popping up again. Little things that just didn't look right. I would point them out to the tech, but I don't know that she gave them much credence. Not that she didn't acknowledge it, but she couldn't see the whole picture like I could.
Dr. Attending called because she was stuck at home for the time being, and she wanted to read the EEG there. I can honestly say I was bummed to hear it. I needed her to SEE what Michaela was doing, because as the morning went on, the flags were waving more and more. Picking the blanket repeatedly, staring into space, smacking her lips, her face drooping on one side, random twitching.
When the doc called, she asked to speak to me. And when she asked how Michaela was doing, I was blunt. She said that two others had looked at snippets of the EEG, and said that it looked the same as Wednesday's study (ie: not that bad). I was undeterred. I told her that I needed her to read the whole thing, and that Michaela just wasn't right. I couldn't say WHY she wasn't right (I had my suspicions), but she just wasn't. And since I wasn't happy with her condition, she agreed to come in and look over the whole thing with Chief.
I prayed. I NEEDED them to see what I was seeing. I just didn't know how to deal with them telling me the EEG was good enough to leave. Maybe I could've been consoled by some random fact about the new drug she was on...how maybe it took a week to really take effect or something. But, truly, I prayed they would keep her there and fix the flags. I didn't want her to crash at home.
After a good long while, Chief and Dr. Attending came back to EEG.
The test was bad. Very bad. It was written all over their faces. In fact, in a strange twist, her sleeping EEG was better than her awake EEG. That never happens.
She was in status, and she would NOT be going home.
I answered with a "Thank the Lord."
****
Dr. Attending motherly told me to keep my RMH room, and signed off the rest of the plan to Chief.
We proceeded to talk about what he thought would be a good plan. He laid out the various drugs they could use as "rescue" meds to try to stop the broken record cycle her brain was in. She was on some of them at the beginning of October, and I knew that 4 of them shouldn't work. But he felt as though he needed to try them again, if for no other reason than just to try....and hope...and pray that they would work.
Because, see, the next option would be medically induced coma. Intubation. Pediatric Intensive Care. The big leagues of serious rescue. I brought it up first, wondering when we would get to that point. I had read how other children like Boo needed that kind of medical intervention in order to stop the cycle. It was like I had read his mind when I mentioned it. He told me that we weren't very far away from it, but the risks were bigger, and he really wanted to try to avoid that. He said he'd do it if he had to, but he wouldn't just jump into it.
I told him that I appreciated that. But I also told him that I was ready to do it, if need be.
I just want my baby back. Chief, just try to get my baby back.
****
So he admitted her again, into the step down unit across the hall from the Pediatric Intensive Care Unit (PICU), called the Special Care Unit. That way, if she needed the more serious intervention, she was very close to help. And in the SCU, she could be monitored very closely. The nurses only have up to 2 patients each, and seeing as some of the drugs in his plan would make her breathing sketchy, they could watch her every move and act fast if it got bad. Even move her across the hall at a moment's notice.
Plan A went into effect almost immediately after she got in the Unit. She was hooked back up to the EEG, and monitored up to wahzoo. He then wanted to try the first line rescue med that she had tried on October 1st. We would know within an hour if it was working.
It didn't.
Plan B was a drug that she had never tried, and at high doses could be a successful rescue drug. He also wanted to go back to a very high dose of Valium (a drug she's been on for 4 years, but we suspected was causing mania) to see if it would help like it had in the past. He almost didn't do this step, but I reminded him how we found the problem causing the mania, and it wasn't the Valium. So he agreed and set up the schedule.
The first dose of Plan B, and Chief called me.
"Hey Boss, the EEG looks better!" You could feel him smiling through the phone....if only for an unguarded second. We both know she's not out of the woods.
****
Tomorrow, we will see if Plan B completely does the trick. When I went to check on her this evening, it was obvious that she was seizing because of the way the EEG looked. Also, we noticed her breathing was wacky---a sure sign. Last I knew, they gave her more Plan B med, and were starting the Valium "load" as well.
Plan C is waiting in the wings, should we need it. However, she failed that drug on October 2nd, so I'm not holding my breath for it. Thankfully, I think we even have a Plan D, and maybe E, before the scary Last Ditch Effort.
But Last Ditch or no, I know she's in Good Hands.
And we pray for the flags to lay still...
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