Be careful of what you wish for...I was hoping Dominic would have a seizure for the EEG study and this morning he had around 30. He woke up bright eyed and bushy tailed at 4:00 a.m. and wanted to watch cartoons. Since it looked like high noon in our room because of all the lights on in the hallway, I could not get him to go back to sleep. The nurse made him a bottle and then 30 minutes later, he projectile vomited all over me and him. We had to cut his tee shirt off of him because we couldn't get it over his hardwired head. By now the bandage holding the eeg leads on his head had come off twice and it was reduced to a little point on the top of his head. I told the nurse he looked like a Cone Head from Saturday Night Live...she had no idea what I was talking about nor did she know who Dan Ackroyd was. Later, I made a Devo joke and she just stared at me. I was obviously dating myself.
So the day went down hill from there. He had his little head drop seizures and I kept track and pushed my little button each time they occurred. By noon the Doctor had seen enough of them on the eeg video recording and told me we could go home. I did get some answers at least. The seizures aren't all coming from the same area of the brain, they are coming from all over the place so these types of seizures are even harder to control. Great. Besides his personality defect, he was doom and gloom. He told us Dominic has epilepsy and could have it for the rest of his life. He suggested I get him a better helmet and patted me on the back and gave me a new prescription to try. He also ordered some blood tests. So, the autism, developmental delays and sensory issues are just all a part of who Dominic is. I can't believe that is going to be it and I'm not going to give up, even though Dr. Personality gave me no hope whatsoever.
I've decided that I must watch too much Grey's Anatomy because my expectations of Doctors seem very unrealistic. I grew up watching Marcus Welby MD and I was under some delusional impression that Doctors became Doctors because they really cared about people and helping people. Maybe I'm jaded, but I have not met a Doctor in the last 15 years that really seems to care. It's all about the money. Rush-rush, one hand on the door, don't have much time to talk--here's what it is, keep the questions to a minimum and that's it. Deal with it lady.
This goes for the nurses too. They must be jaded. I had to summon a nurse to relieve me for 5 minutes so that I could pee. I held it so much, I'm probably going to get a bladder infection. Every time I hit the Nurse button, I felt like I was bothering them. No body ever asked me if I needed anything, no one asked if I would like a break or to go get dinner or a cup of coffee. I was like a prisoner in this little hospital room. Even when I had barf all over me this morning, I couldn't go into the bathroom and get out of my clothes. I really thought Stanford was going to be rainbows and sunsets...after all, they are located right next to a fabulous mall with Neiman Marcus and a California Cafe, I could almost smell the freshly brewed Starbucks and rolls from Cinnabon waifing through our private hospital room. They made so many promises on the phone about the wonderful play room, but then Dominic couldn't access because he was tied to a pole. They told me there would be volunteers that come to play with the kids so the parents can get a break, I never saw one. They bragged about the high tech-mobility factor of this eeg study, and told me how Dominic could run around the room. He surely could not move around the room freely, it was a total nightmare. Anyway, if it sounds like I'm complaining a lot, it is because I am. It's something I've gotten really good at.
I've never been a shit-taker before, and I've never been afraid of confrontation. But, the stress of the Doodle has made me even more of a raging bitch. I'm not taking crap from these people that are getting paid a lot of money to do their jobs which should include having a smidgen of kindness and empathy for what the patient and the family must be going through. So you can count altercation #4 when I told the rude Lab Tech that we had been waiting 40 minutes while she was on her cell phone in the hallway and altercation #5 when I told the EEG Tech to get me a God Damn pair of scissors so I could cut the glue and probes out of my screaming baby's hair. And, when she was being rough with the washrag and hurting him, I had no problem telling her to be more gentle, this was traumatic enough for an Autistic child...I told her to pretend for 5 minutes like this was one of her children screaming and not understanding what was happening to him.
We are so glad to be home. Grammy gave Dom a bath and got most of the residue out, I didn't burn the bread tonight and the finale with the sensitive and concerned Doctors is on, my favorite show, Grey's Anatomy.
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