Hospital Antics: Monday Monday

***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...

Hospital Antics: Saturday Version

Wow....life's been somewhat hectic since the last time I posted. Where to start?

Well, the new "Cube" room has been a real blessing....just so nice. I didn't really think I would like it that much--being away from her and all--but it has been nice to escape from time to time. The funny thing about it, is that between me and the day and night nurses, we are all named "Kelly," and of course, there are 2 Michaela's in the room as well....what're the odds of that???

I am currently living at the Ronald McDonald House down the street. Man! What a nice place! If you've never put any money in those boxes at the McDonald's cash register, then you need to sometime in the near future! The bedrooms are very similar to hotel rooms, and the main living areas are SO NICE. It houses 41 families at a time, and we each have our own pantry, our own mailbox, our own space in the huge fridge and freezer. Volunteers donate food or cook it in the ginormous kitchen, at least 2 meals a day. The pantry is stocked with all kinds of snacks, drinks, canned goods, baby food, cereal, pastries, whatever. There are free laundry facilities and secured, free parking.

The neat thing about staying at the RMH, is that everyone there has a sick kid like I do. We all have different stories, but they all sound vaguely familiar. We eat together, do laundry together, talk awhile. We see each other in the hospital, and it feels good to know someone there. When we get "home" at night after a day of staying with our kids, we ask each other how they're doing. We know the kids' names, their illness, their drug regimen. It's a community. A big, communal support group. A very neat thing.

Unfortunately, the RMH only has internet access on the main floor (not in my room--it's busted), and when I've been at the hospital, I haven't wanted to be on my computer, because I don't spend all day with Boo anymore. It just seems wrong to be online when I'm there to see her and spend time with her. So that's the reason for the lack of updates.

But I know you're anxious to hear about Michaela, so here's what she's been up to:

******

After my conference with Chief and Dr. Psych the other day, we started playing around with her meds. Out of the three she was on when we came in here, we are taking her off of two, and adding a third. We've also added a psych med to calm her down a bit. The theory behind all this, is that one of her long-time seizure meds started turning against her. Puberty is the likely culprit. However, the seizure control it gave her, made the decision a hard one to make. Michaela has tried and failed most every seizure therapy known to man, and having to take her off of one that actually HELPS (the seizures), is really an awful position to be in. Chief wasn't quite sure WHICH drug to replace it with.

But what they ended up doing is putting her on one that she used back when she was about 5. Even though she failed it before, she may not fail it now, since her chemistry has changed with puberty. At least, that's the hypothesis.

Chief told us that out of all the LGS patients he's treated, Michaela's condition is completely on the fringe. He's never seen anyone experience psychosis from that med (and he's treated kids with it for years--even as part of the original drug study), and Dr. Attending was really just astonished at how unique her EEG looked compared to other kids with her condition. It's almost as if she has something that just hasn't been named yet, but they're calling it LGS because there's nothing else out there to call it.

So back to the meds...

Well, the first night we had her on a half dose of her main one, a half dose of the other main one, and a third dose of a lesser one. Plus we added a high dose of the new (old) one. And the next morning when she woke up, we saw the old Michaela for a few minutes.

We hadn't seen her in over a week.

This was very encouraging, because it meant we were on the right track. After trying this, that, and the other thing, it seemed we had actually found the problem. Now, it was just a matter of completing the process, to see if we would get her back fully. If that happens, then it would be the first time Chief has ever heard of such a thing happening.

Leave it to my kid ;)

And sure enough, after completely eliminating that main drug last night, today is a better day for Michaela. She is mostly herself today, with just brief spurts of the psychosis we came in for. Today, Dr. Attending told us she was "not allowed" to be in bed today at all. She has to get dressed, play, eat (which she hadn't been doing), and do all the normal stuff she would do on a regular Saturday. This is in an effort to retrain her brain how to sleep at night (which she hadn't been doing fully), and how to be normal.

The major concern right now is breakthrough seizures. Since we're radically changing her drug protocol, there is a high chance she will start having strong and long-lasting seizures. There's also the possibility that she won't tolerate the new med more than a short time. Her brain has been "shocked" with all the changes, but once it settles in, it might reject the new chemistry we're imposing on it. She also has started "thrusting" her tongue and clacking it like a hungry newborn baby. This behavior is usually associated with mental instability, so I'm keeping an eye on that as well.

So we're still waiting it out for a few days. I pretty much refused to be discharged over the weekend, but wanted to reassess on Monday, and make sure she was in the clear. We're going to do a final EEG on Monday night, and if everything stays looking as good as they are now, then we should be discharged on Tuesday.

I am cautiously optimistic :)

And for the record, it was MY idea to take her off the med, and it was CHIEF'S idea that she would come back to us someday....

So we were both right....and that NEVER happens :)

*****

For the first time ever, Chris and my parents were both with me in the hospital. Neither could stay for more than a few hours--Chris the afternoon, and Mom and Dad less than a day--but it was nice to have them there. I thought that it would be good to call a meeting between them, me, Chief and Dr. Attending. Chris and Chief hadn't even seen each other in 4 years, so it was good to catch up. Also, I hadn't spoken with him for a couple of days, so there were a few things I wanted to solidify.

Mainly, the next step in her testing.

He reassured me that even though we wouldn't be able to tackle that test THIS visit, he was pretty sure it had been scheduled for late November. He said he would check on it, and get back to me on Monday. Either way, Chris asked him how long it would take to go from MRI (the first test) to surgery consult--where we actually decide to go through with surgery (IF we go through with surgery). Thankfully, Chief thought about 4-6 months. That was a relief to my mind (hey, one down, 5 to go!). He hates to be nailed down to time frames (because there are so many different schedules involved), but I can't function without them, so he gave enough time to schedule the various tests, but not too long to frustrate me.

So that's the long and short of it. She's looking good, we're watching for any signs of seizures, and the testing schedule is moving along.

Oh, and I'm hoping to be home by Tuesday ;)

The One in Which We're Back in the Hospital

Last night was unbelievably difficult. If you saw any of my updates on Facebook from the middle of the night, you could probably tell. In a 24-hour period, she slept 4 hours, from 6-10pm. Once she woke up at 10 (ready to beat the band), I waited to see if she would calm down and settle down again. It was stormy with tornado weather, and very dark, so all the cues for her body to go to sleep were there. But it made no difference to her.

At 11:30, I had the nurse check to see what meds the residents had ordered for her to take now that she was "crazy" again. To my surprise, they hadn't ordered ANY rescue meds. I was astounded, since we needed them just the night before, and her condition hadn't improved enough to take the order off. I had her call the resident on call (not neurology), and she effectively told me that she wouldn't do anything because her hands were tied--no orders were written. We'd "have to wait until morning rounds."

Now, if you've spent any time in a hospital, you know that was nothing but "passing the buck." They have multiple pagers at their disposal they could call; not the least of which, the neurology pager.

But in an effort to not rock the boat too much (I hate to come across as a pushy mother!), I just accepted it, praying she would be quiet enough for me to get decent sleep.

I slept lightly from 1 to 3. By three she was being very loud. She had started laughing and hyperventilating--to the point where the EKG leads were picking up on it, and sounding the alarm on the machine.

I had had enough. We had been doing this mess for 3 weeks now, and I was THERE to get it fixed. NOT live with it some more. It wasn't as if I could even go out to the living room and get away or anything. I was drained emotionally, physically, and mentally.

I called her nurse and told her, "Feel free to blame it on me, but I need you to call that resident NOW, and tell them that I want to see him, ASAP."

Poor girl! Her eyes were like a deer in headlights, and she just nodded her head vigorously as she quickly shuffled out the door.

Fairly quickly, Dr. Harmon walks in the door--a young, potentially wet-behind the ears resident who had been stuck on the most unforgiving shift--the graveyard shift. Again, he told me that there was nothing he could do, because the orders hadn't been written. However, I KNEW he had those pager numbers, and I KNEW he really didn't want to call his higher-ups and wake them (I mean, honestly, why give me an excuse when you can clearly see how manic she was acting and the tears pouring down my face? He just didn't want to DO IT.) And after I pointed out the fact that neurology was only a phone call away, he went ahead and made the call and got her some rescue meds.

Unfortunately, it didn't really help. She didn't respond to them, truly, but just zonked out 2 hours later from 8 straight hours of intense activity. The drug should've worked within minutes.

I was an absolute zombie this morning, and everyone could tell. In my normal hospital routine, I would be out of bed around 6:30, wash up, get dressed, and tidy the room for the multiple doctors, nurses, and techs that would shuffle through before 10am. But not this morning. I curled up on my chair-bed, and didn't give two licks who came through the door or in what condition they saw me--the rumpled clothes, frizzed out hair, or tear-stained face.

At about 8:30, after many interruptions of nurses, breakfast, and residents, the attending neurology physician walks in. She's a no-nonsense kinda gal and got straight to the point:

"How much sleep did you get last night?"

"Wha?" I answer in my fog, "You mean, how much sleep did SHE get last night?"

"No. I KNOW she didn't sleep last night. Did YOU get ANY sleep?"

"I think I dozed for 2 hours."

"Ok, well then here's what I want to do. You need to go home. You don't need to be here any longer. This is not good for YOU. I can take care of HER, but I need you to get some sleep, and keep your resistance up so you don't get sick here. I'm gonna shake every tree in this hospital so I can get her into a Special Care unit, and you don't have to stay with her at night any more. I'll even put her in ICU if I have to!"

And shake she did. Within a couple of hours, she had her on the 7th floor in their "Cube:" A 6 bed open dorm for children who's parents can't stay with them. It's usually reserved for very long-term patients who's parents have had to resume a normal schedule (work, school, etc.). There are a couple of nurses who are responsible for the kids in the Cube. There is no privacy besides the pull around curtains typical of old-fashioned hospital wards. It's a noisy, cluttered, busy space.....depending on how many beds are taken.

Currently, the 7th NW Cube is housing 2 children: Michaela, and Makayla.

No joke :)

*******

After the Attending made her grand announcement (of which, I was grateful for her compassion, but uneasy about leaving Michaela), she brought me right on down to the second floor where they upload the EEG information to the general server. So here's me, the Attending, and the three "ducklings" (residents) that follow her every move, marching down the hall. Again, I was still in my bed clothes, rumpled, ruffled, and still foggy. We got the EEG uploaded and she flipped through hours and hours of recordings....looking for a clue to what we were dealing with.

"Kelly, tell me, why does Chief think Michaela has LGS? This doesn't look like classic LGS."

Taken aback at such an unexpected statement, I proceeded to spout out the three qualifications for LGS: Slow wave/spike pattern on the EEG, medically uncontrollable seizures, and mental retardation. Classic onset, 3-7 years. She fit all the criteria.

Well, for some reason, the EEG didn't look classic LGS to the attending. She got real animated and proceeded to tell me how she "wanted to see previous EEGs," and "we gotta get to the bottom of this." Head Duckling noted how many drugs she was on, and how they would make the EEG different....but she was a woman on a mission. She was ready to save the world. Truly, she wasn't knocking Chief's diagnosis, but with no leads in Michaela's case the past few days, I think she was just excited to see something she could try to figure out.

The Lord knows, there wasn't much else exciting about Boo's case.

********

After working out the details of a hotel room for me courtesy of Children's Hospital (because, no, I was NOT going home....yet. She still needs a Mother close by!), I proceeded to find Chief. I really liked the new attending physician, but there's nothing like touching base with your child's personal doctor. I knew that in my emotional state, once he saw me, he would be glad to talk to me--even without an appointment...he's just like that.

But when I got to his office, he was in a meeting. The meeting room was just across from the secretary's desk, and I could hear his voice.

They were talking about Michaela.

I quietly excused myself, and walked back to our room. Once I got there, the nurse told me that she was told to page Chief when I came back. Come to find out, while I was figuring out the hotel stuff, he was in my room with Michaela. Since I didn't show up, he went up to his office to talk to the other docs about her case--the meeting I heard.

He came back down to the room and we talked. We are both stumped. The attending is stumped. No one is quite sure what to do. Even the psychiatric physician (who walked in on our meeting), was clueless as to the cause and cure to her problem. They're just making the best educated guesses they can.

I just wanted to know if I was getting my daughter back again.

Chief thinks she'll be back. But he's not sure at what cost. Or when.

It was easy to hear it from him, but it was very hard to hear.

I voiced my opinion, asked my questions (very few answers...don't worry, I'm getting used to it), and stood back and asked BOTH doctors,

"OK, you guys are the professionals. We need a plan until tomorrow at least. Chief, do you have a plan for today? Dr. Psych, do YOU have a plan for today?"

They both said they did, and so, we're off....

*******

I'm doing better this evening. This Cube is something spiffy. I'm only allowed here during visiting hours, and so I don't feel too bad about letting the nurses do all the nursing. Not that I won't help, but it's been nice to know that I don't feel obligated to. I'm not stuck in a room. I don't have that claustrophobic/jail feeling anymore. And the nurses aren't used to having parents here, so they don't expect anything out of me. Michaela doesn't even seem to know that I exist anyway. Which means I'm "free to roam the country" so to speak. Which is nice, when all you want to do is go grab some lunch...

And get some sleep :)