Thursday, August 12, 2010

For Documentation Purposes

Today was a pretty scary day. My poor little Sadie spent most of the afternoon in the ER. Her woes seemed to be due to medical negligence, and so I write this to preserve the facts as we plan to move forward legally.

While in the PEMU earlier this week, Dr. Rabin suggested we start giving Sadie something called Baclofen to help with her high muscle tone. It's basically a muscle relaxer because she's tight all the time, he said he'll start her on the lowest dose and we'll see how she does. He also mentioned we should do it right then while she's on the monitoring because Baclofen can lower a person's threshold for seizures, and we'll know right away if this happens. We started it the next day, she was supposed to get .1mL 3 times a day, which is 1mg and BARELY a drop of medicine!

She seemed to do fine, and her muscles seemed to be relaxing, so Dr. Williams (the neurologist) wrote the prescription and the hospital found a pharmacy who would mix the compound and called it in. They also gave us the paper prescription when we were discharged Wednesday morning (she had been given 3 doses total when we left the hospital).

Brian picked up the prescription that afternoon and we gave her her first dose at home Wednesday evening (so she skipped the Wednesday midday dose). The bottle from the pharmacy said to give her 1mL, which is a lot more than the tiny drop we were giving her at the hospital. But, like so many medicines, I figured the concentration was different than what they were giving her at the hospital, and we gave her 1mL.

Sadie fell asleep that night at about 7:50pm. She snored a lot during the night, and even had some periods of apnea, it worried me a little bit, but I didn't know what it would be. She slept in her crib all night (which doesn't EVER happen), and when she stirred in the middle of the night, I pulled her to me to nurse back to sleep (and fill her tummy), but she fell back asleep as soon as she got close to me. I figured she had been cold and being next to me and under the covers made her all cozy so she could fall back asleep. I was AMAZED at how well she was sleeping! I even got up early and went for a walk!

I had to WAKE her up at 7:45am, and even that was tough. She didn't want to nurse, she wanted to go back to sleep!! I couldn't believe that she was still so tired! But I gave her another 1mL of medicine then (at 7:45) because that's when her next dose was supposed to be. Then I went to change her diaper and it was completely dry. I was amazed, and thought she must have slept hard! I was still having trouble keeping her awake though.

I got her dressed and tried to nurse her again, she sucked a little, but immediately started choking and coughing and gagging. I wondered if her new medicine was causing her throat to relax and making her aspirate. So, I called and left a message for her pediatrician. Then I tried to nurse again, same thing. She was really floppy, I could manipulate her arms and legs unlike she usually lets me, and she was very calm, dopey, not herself.

We had Occupational Therapy at 9:00am, Jessica came to work with Sadie. She noticed Sadie was sort of out of it also. When she got there I had placed Sadie on her tummy and she wasn't even crying like she usually does, she was just laying there passively. She didn't want to hold up her head, her top half was really floppy, but her legs were VERY stiff. And when she cried/protested, it sounded funny. Her voice sounded funny. About half way through therapy, I tried to nurse Sadie again because she was indicating that maybe she was hungry, and she nursed briefly, but she just wanted to fall asleep, so I pulled her off and gave her back to Jessica. At one point, when Jessica was holding her Sadie spaced out for a moment, even Jessica said, "you weren't with us for a moment there!" I wondered if that could have been a seizure and I worried since we had JUST come home with a seizure clearance.

As Jessica was leaving, I sat down to try to nurse Sadie again, thinking she was probably tired. She was crying a weird cry that didn't sound right, so Brian took her for a moment and he agreed with me that she was acting weird. I told him I wasn't going to give her anymore of that medicine until I talked to the doctor because I didn't like what it was doing to my baby. That's when Brian suggested maybe the dosing was wrong. During this conversation, Sadie had nursed herself to sleep in under 10 sucks and was SOUNDLY sleeping in my arms. Usually when Sadie sleeps, she startles a lot, and the slightest movement when holding her will wake her up, this was limp limbs, toss her around, never wake up sleep. We got the bottle of Baclofen and read the dosing again: 1mL. Then we read the strength, that it's 10mg/mL. I quickly did some math in my head and said to Brian, "wait, her prescription says to give her 1mg, and if this is 10mg/mL and we're giving her 1mL...we gave her 10mg!! No wonder she's dopey!"

We immediately called the pediatrician's office again, but nobody answered and we had to leave a message. Next I tried the neurologist's office and a nurse answered there, Stephanie. I told her what happened and she kept putting me on hold and trying to reach Dr. Williams or Dr. Jarrar (who also knows Sadie) to find out what to do. She said we could bring her in if we felt like we needed to, but Sadie was sound asleep in my arms and didn't seem to be too bad off. Stephanie told me that since it's a muscle relaxer to keep a close eye on her breathing, I assured her that Sadie was breathing, but her breathing wasn't normal. I asked her about the eating, because it was now 10:45 and Sadie hadn't really eaten much since 7:30 the night before!! She told me to try to wake her up at feeding times and encourage her to eat, but she may not be interested. She said it's important for her to sleep and when the medicine wears off she'll be hungry. And she made sure to tell me NOT to give Sadie anymore medicine until we talk to her again in the morning! She also asked about seizures. I told her I think maybe I saw one already. She told me to keep an eye on that and if I see Sadie having big seizures, cluster seizures, or doing anything concerning to bring her in right away.

I didn't want to put Sadie down. Her breathing was irregular. She was still snoring and having episodes of apnea, but I had to go to the bathroom and my stomach was growling because it was after 11:00 by this time! I laid her on the floor while I used the bathroom and made lunch and I noticed that her lips were blue. She looked dead and it scared me. But she was still breathing, so I figured we just needed to get through it and she'd be better tomorrow.

Then she woke up.

She woke up about 11:45am and was groggy, nursed a little, then went back to sleep for another half hour.

The next time she woke up (about 12:30) she wasn't happy at all. I couldn't get her to nurse, she just kept screaming, and her voice sounded funny (I think her vocal cords may have relaxed and this is why her voice sounded funny), it was lower, more throaty. So, I tried putting her in the bouncy seat and that didn't help either. I picked her back up and tried again to nurse her, more screaming. So, I laid her on my knees and she started shaking. Like weird shaking with her arms outstretched and uncontrollably. That scared me. I didn't know what to do, but then it happened again and the look on her face was of utter terror. I called the nurse back and she said, "I can hear her screaming, take her in."

I grabbed my purse, Sadie's blanket, and the medicine (and the written prescription) and headed out the door. I put Sadie in the car seat and called Brian as I was pulling out of the driveway. He said he'd meet us at the ER as soon as he could. Even though PCH is not the closest hospital, I knew it was the best place to take her since 1.they have all her records (and I mean ALL), and 2. I know they are the best at treating children. And I didn't regret it. The car ride was HORRIBLE. Sadie would stop screaming (probably because she was having a seizure) and I'd reach back and pat her on the head or flick her cheek to get her to cry again. I was so afraid she was going to stop breathing, and I couldn't see her. I knew as long as I could hear her crying she was breathing. The one time I WANTED her to scream in the car!!

PCH has free valet parking, so I pulled up and asked the guy where the ER was. He quickly wrote my ticket up and we practically ran to the door. When we walked in everything happened VERY FAST. I'm sure I looked terrified. I was carrying a screaming baby. One guy handed me a visitor's badge, another guy asked me what happened. Luckily, I had the presence of mind to bring the medicine, so I pulled it out of my purse and said, "she ODed on this." I followed a nurse back to a room and laid Sadie on the bed and that's when I saw the scariest thing I've ever seen. I saw a BIG seizure. Her pupils were dilated, her eyes were darting back and forth, her arms were outstretched shaking, then she'd bring them in tight and to her chest and everything went rigid. I said, "look! Look what she's doing!" I swear we all stood there with our mouths open and watched. They quickly got a pulsox on her to measure her oxygen levels, I told them her breathing was irregular, then they stripped off her clothes and put the EKG monitor stickers on her to measure her heart rate, and a blood pressure cuff went around her ankle. I was crying, they were telling me it's not my fault and I came to the right place, then the lady came to ask me who we are. This is why I came to PCH, all I had to do was tell her Sadie's name and birthdate and she was able to get everything from the system. That took a load off of me!

I was asked a lot of questions about Sadie's medical history and about what happened exactly and what I had observed up until now. Then Sadie calmed down a little bit, and I calmed down a little bit, and WHERE WAS BRIAN!!! Next a doctor came in to ask me more questions and to look at Sadie. He took the bottle of medicine and went to call a toxicologist. When I asked him how do we detox her, he said he was waiting to hear if what we gave her was a toxic amount. If it was determined that she did get a toxic amount, they'd admit her and keep her overnight. If not, they'd just keep her for a few hours to monitor her. By the time he came back, she was already coming out of it. The doctor told me she wasn't acting like she should if she'd ODed on Baclofen. When I asked him what it should look like, he described to me what Sadie had been doing the first half of the day, before the seizures started. But once she started seizing, she tightened back up and started screaming, instead of being floppy and comatose, like before. He said it's good that she was looking more normal, even her pupils were starting to shrink a little. By the time Brian got there she was almost quiet.

They decided to keep her and watch her for at least 4 hours. They wanted us to sit with her and let them know if we see anything weird, or normal, and they wanted to make sure she could eat and pee and stuff before she left. So, we sat there for a long time. And Sadie calmed down quite a bit, but everytime I started nursing her she'd cry, or even scream again. But, eventually she did nurse, and she started to fall asleep again, and eventually she did fall asleep, and she was soundly sleeping when the toxicologist came in to talk to us.

We relayed our story again to him and he assured us that any seizing that Sadie did did not cause permanent damage. The thing they'd worry about with seizures is low blood/O2 levels because these can cause lack of O2 to the brain, but Sadie's levels never went so low that she was in danger, and she was at 98% when we were talking to him. He also said that the amount she overdosed was not enough to have long-lasting effects on her system. He said we gave her 10X too much, but it'd really have to be 1000X to REALLY hurt her. So, that was good news too. He told us we could choose to keep her overnight for more monitoring, which he recommended, or we could take her home. He wanted to keep her there in case she had another big seizure with the crazy eyes and the tightening up of limbs and everything. He said they could break it via IV if she was in the hospital. We politely declined. We have the same medicine at home that they would give her in the hospital to break/treat the seizure, she seemed to be a lot better already, and we (I) did not want to stay another night in the hospital!! So, at 5:50pm, we left PCH and headed home.

Since we've been home, Sadie's been a little fussy. We had to give her her phenobarb (unfortunately), but then we took a nice long bath, and the warm water calmed her down quite a bit. She is still very tired, and as soon as we were out of the tub, she fell right asleep. And she's sleeping hard, she is laying next to me on the couch as I type. She will be sleeping with me tonight so that I can listen to her breathe all night! And hopefully in the morning, she'll be back to her *cheerful* self again. Poor little baby, what a rough day!


  1. big seizures are so scary. so sorry you had to go through that today. i am so glad you're so proactive and figured things out so quickly. Praise GOD she is okay.

  2. Wow, as if everything that's happened to Sadie wasn't enough already! Sorry you had to go through all that, but good to hear that she's doing better.

  3. I stumbled on your blog after googling baclofen for some personal experiences. We had a similiar scare after a pharmacy mix-up from our local children's hospital had us giving our son five times the dose he needed (prescription called for 2.5ml when he was supposed to be getting 2.5mg or .5ml of our concentration). It was a very rough day!

    Sadie is adorable! Your blog has been an inspiration for me.