I can't even believe this shit! I'm sobbing uncontrollably after the phone call I just had.
Jayen started seizing this morning at 6:54. He drops his head and shoulders so quickly I call them jackknife attacks. This continued for 15 minutes before I called Matt and asked what he thought I should do. We haven't met with Dr. Jarrar yet so we don't have a true plan in place for anything. We really didn't know what to do so when it hit the 20 minute mark I opened our new package of rescue medicine and tried to give him one. Jayen is not used to this medicine and didn't like that he had to leave it on the side of his mouth. He is good at swallowing medicine but not good at holding in the side of his cheek. He put up a good fight. The seizures continued for another 5 minutes so I called the on call physician at Children's Hospital Phoenix. The on call physician was pulling up his file and said he kind of remembered Jayen from the hospital stay. He was very quick to read that these were not seizures. I was truly upset, furious, enraged, infuriated, irate, seething, etc. I explained that I called Dr. Jarrar when she returned and she said they are in fact seizures. He continued to tell me all he had to go off of was the notes in the computer and they said they were not seizures. I was getting stern with him that something was happening to my son and I was calling the hospital for help and answers. This jack tried telling me to calm down and that getting upset would not help my son. I understand he was trying to deescalate the situation, but truly all he was doing was the opposite. He wasn't sure what to do and asked if he could talk to Dr. Jarrar and call me back. I was more than happy with that option until he said he had to starts rounds soon and would try to get back to me afterwards, like in about two hours. This is when I truly lost it on him. I don't understand how I am supposed to sit here and let my son continue to seize for another two hours while you go do rounds. That is when this (not nice for anyone's ears) told me that there are other patients "on death's door" that are more important than my son right now. If I really felt like he needed help right now then I should bring him to the emergency room. In tears, I quickly responded that the last time I did that it got me no where. He finally said he would call Dr. Jarrar and get back to me as quickly as he could.
Within two minutes, Dr. Jarrar was on the phone with me. She profusely apologized. She had me give him another dose of rescue medicine. She explained that somehow the neurologists must have reviewed his file and determined that he was having seizures but we were already discharged. She did say that they had already increased his medicine so they wouldn't have done anything different anyway. But don't you think that would have been good information to share with the parents. Yes, your son is having seizures, here is your new seizure protocol. That would be the perfect thing to tell a parent who just left the hospital disagreeing with your diagnosis and asking what my options were. I begged her to put something in his file that states these are seizures. At this point in time his seizures are not responding to the increase in his Keppra. Dr. Jarrar suggested we try another medicine known to help with spasm and drop seizures. She would like us to add Onfi. We have been on this before and Jayen responded well in the beginning but like most of his medications the honeymoon period eventually faded and it stopped working. This medicine does require a prior authorization so we are not sure if we can get it before the weekend. If we can't get it then she would like us to start another medicine in the meantime. I was given titration doses for both medicines.
Why can't she be the other person I deal with. I truly do like her and appreciate her opinion. I feel she is incredibly knowledgeable and understands Jayen's whole story. But to have to deal with the rest of the hospital has been such a fucking nightmare. I will be calling and filing a complaint today. Cluster of seizures today lasted one hour and 12 minutes.