After the awful post-op day one we experienced, things improved enough on post-op day two that they decided to send us home. In hindsight, that was a mistake. Even the neurosurgeon thinks they sent us home too soon. Post-op day four Allison was in pain, a lot of pain. The only thing we could give her was Motrin and Tylenol, and she would vomit whenever we gave her meds, which meant she was not getting any pain relief. The doctor called in some Zofran and valium to try to help. Thankfully, if she was taking the Zofran she was able to keep down some food and medicine. Tylenol suppositories were also extremely helpful because even if she did vomit, we knew she was keeping medicine in her system. The entire week following was extremely difficult.
Allison vomited for about nine days after we were home if she was not taking the Zofran. She was in constant pain. She didn’t sleep well or eat well. We were all exhausted and we were so worried about her. I was on the phone with the surgeon’s office constantly, making sure what she was experiencing was normal. About two weeks post-op she started running a low-grade fever and her tiny little voice was hoarse she sounded so sad. I contacted the surgeon again and they said to see the pediatrician since she was susceptible to infection from the intubation and vomiting. After having a COVID test and being sent away by the dismissive doctor in the pediatric urgent care, the pediatrician put her on antibiotics which cleared up the infection. Immediately following the end of the antibiotics, she got a stomach virus. She was throwing up with diarrhea and again running a low-grade fever. None of this was surgery related but we couldn’t understand why she was getting all of these infections.
While we were dealing with these infections, she started to have her “episodes” again, which she was having before her surgery. We called them episodes because it was never clear exactly what they were. She would wake up from naps or soon after bedtime screaming. She is inconsolable, nonverbal, and can’t be touched. These episodes would last anywhere from five to thirty minutes and it is painful to witness. We thought it was possibly pain and would go away after the surgery. But instead, she had four of these episodes in just over a week. That was much more frequent than she ever experienced them. We scheduled an appointment with the neurosurgeon and he decided they were possibly seizures and we needed to bring her to see an epileptologist. He also thought we would see more improvement of her symptoms at this point and she may need another surgery sooner than we anticipated. We met with the epileptologist and she agreed these episodes were possibly seizures and she would hospitalize Allison for a week to conduct an EEG and brain MRI. This broke our heart because we really thought surgery would have helped her. Meanwhile, the pediatrician is concerned with the infections she has been getting and if she gets another soon, we will need to see an immunologist to investigate.
I believed the surgery would be the worst part, with recovery a close second. But nothing prepared me for all of these setbacks. I don’t feel like we’ve made any progress and it scares me what else is hiding around the corner. I just want my baby girl to feel better and begin to live her life like a healthy two-year-old should. Instead, it’s constant doctor’s visits that petrify her and results that petrify us. But her strength inspires me. She has been through so much in her short span of life, and when she’s able to, she plays and smiles and forgets about it all. I never believed I was a strong person, but this has definitely proved that when I need strength, I find it. Despite the fact that this is physically and mentally exhausting, I have no choice but to pick myself up and keep going.