Our pediatrician thought we could benefit from having hospice support for a few more months so we continued to have nurse Linda come to our house once a week. Her job now was helping us in the process of weaning Lexi off Morphine. It didn't take long for Lexi to go back to her previous irritable self.
She hated the car. She hated her crib. She hated being by herself. She hated crowds. This looked like hours of screaming every day and most of the night.
Being alone with a crying baby all the time brought up many emotions. I had a lot of guilt. I believed I should be able to figure out what was wrong and fix it. I felt completely inadequate as a mother. There were lots of thoughts that Lexi was given to the wrong family. I was sure that if she had a different mom she would be happy. I was sad and afraid. Sometimes I would rock her and cry right along with her. Over time I got angry. At God and eventually Lexi. Though I knew she couldn't help it her constant crying felt like rejection to me.
Every outing was incredibly stressful. Her Dr. gave us a calming medication after an appointment that we could hardly talk through because of the decibel of Lexi's screaming. We gave it to her that afternoon for the first time.
Lexi was very fussy that evening. She cried for so many hours that she finally stopped crying and kept making these almost coughing sounds of irritation. She wasn't eating and she was in constant movement. Her arms were cycling like she was washing windows. Daniel and I took her to the ER.
When they saw Lexi they rushed us back until they realized our situation. It was very confusing to explain to them that even though Lexi was on hospice she wasn't dying. We were young parents and it was clear that the hospital staff had ZERO respect for us. They decided she was acting that way as a result of being taken off morphine and gave us more of the calming medicine the pediatrician prescribed. Lexi was worse when we were sent on our way than when we got there.
That night Lexi did not sleep or eat at all. Her constant movement continued. I felt incredibly helpless seeing how she was suffering. She was exhausted and I had no idea how to help her. I decided at 4 in the morning to take her back to the ER. Daniel refused to go with me because he thought it would do no good. That 30 minute car ride was filled with desperate prayers for Lexi and angry thoughts towards my husband.
When I got there I was treated rudely once again but after insisting that this behavior was NOT normal for Lexi and not a result of going off Morphine they did some tests. They thought she might have a urinary tract infection and gave me antibiotics. I went home with Lexi still having a hard time.
In my exhausted haze I realized that the one thing that changed since the craziness started was that Lexi started a new medication. I decided not to give it to her that day and see what happened. Sure enough she went back to normal. The lab later reported that there was no urinary tract infection.
Lexi's pediatrician was told that she had been in the hospital and called to check on her later the next day. She said that some kids have opposite responses to mood altering medication. Instead of calming down they get wired. She offered to try a different medicine and I said, "NO WAY!"
After that horrible night I decided I could handle a baby that screams most of the time. Seeing Lexi go through that experience was traumatizing for me. I was so afraid and helpless to make things better for her. It was a glimpse into the dark spaces awaiting us with Lexi's challenges. It would take many years for me to be desperate enough to pursue the option of medication again.
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