Our first week home

I’m not going to lie. I really debated staying in the hospital. Staying in the hospital was easier. It was nice to step back and let the nurses deal with her aggressive behavior. The hospital was a controlled setting. Very little stimulus, which meant, very little for Maddi to be agitated by.

Maddi’s behavior up until this point was overwhelming and exhausting, and I already needed a vacation from managing it for 8 weeks. I was scared out of my mind to come home with her, and her potentially be very aggressive, or have seizures, etc. Again, all of those “worries” that used to be irrational, were now very realistic, and I found myself staying awake at night, watching her sleep, and waiting for the worst to happen.

But, the worse didn’t happen, and that first night home, Maddi slept for 11 hours.

Then on Sunday, Maddi just laid around, and was tired and fatigued, and even though it pained me to see her that way, it was also some relief. One more day we are not holding her down.One more day of peace in our house.

We were very hesitant about giving her the Risperdal once we were home. Anti-psychotics are exactly that, Anti-psychotics, and in my field, I’ve seen way too many kids over medicated, or worse, on the wrong medications, that it scared me to think about the long term impacts on Maddi’s brain. I resolved myself to talk it over with the Pediatrician that week, before filling the prescription.

That next morning, Maddi lost it.

It was like living our nightmare all over again.

She yelled. Screaming. Kicked. Slammed doors.

I couldn’t leave and go to work. I called and got her into the Doctor’s immediately. Her Doctor has been wonderful in being an liaison to the other members of the treatment team. Her insights and input have been key in initiating some of Maddi’s treatment. She has been a wonderful advocate for us, and I am forever thankful for her. It was important she see Maddi, and just make sure everything was Ok.

We left her office without many answers, but feeling supported. Dr. Ryan would of course, so whatever she could to make sure the treatment team was abreast of Maddi’s progress.

Maddi’s behavior continued to escalate the next time. Screaming and being aggressive for close to two hours. The only thing I could do was to hold her in my arms to keep her from hurting herself.

The next day, we were given the recommendation of keeping Maddi’s steroid dose the same, without tapering, and then increasing the Risperdal to twice daily.

Well…we hadn’t started the Risperdal, so I guess it was time to admit the short term benefits, outweighed the long term risks?

After her first day on Risperdal, the aggression disappeared. On day two, Maddi begged for me to turn on music so she could dance. She ran around the living room, jumping up and down, listening to her favorite artist, Taylor Swift. It was like a Miracle! Maddi was acting like Maddi again! Day Three, she was playing with her brother, giggling uncontrollably, and talking up a storm. Day four, she went to ballet class, and danced with ease!

Could this really be it? 

Did Maddi only need one course of treatment?! 

Did Risperdal really give us our baby back?!

I was so hopeful as the weekend went on, and Maddi engaged in normal activities like planting flowers, playing board games with her big siblings, legos, coloring, playing on her tablet, and being an annoying 5 year old! We were getting our baby back, and she was going to be ok! 

Then she had a meltdown on day 6, but it was short and not like before…so, it’s ok, she was just being five.

Day 7, but then she was agitated and irritable all day long. Whined and groaned, and slammed things on the table. I just tried to calm myself: she’s having an off day. We all have em, it’s ok. She’s five!

 

Day 8: Maddi woke up irritable and had what we refer to as an “episode.” She was irrationally upset. Slammed her door. Slapped me. Screamed. Yelled, and even pushed her baby brother. This was the Maddi that existed before, and then I was scared.

She had FIVE good days. FIVE. Why is she getting worse again?

Thankfully we had a Neurology appointment the next day. I hoped that they would consider this regression, and want to continue with more treatment, because I was deathly afraid of Maddi becoming so sick again, that she could barely function. Seeing as how no one could give me a straight answer as to the treatment objectives and trajectory, I prayed that the Neurologist would have a proactive game plan.

 

 

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