When Good News Isn't Good News

Who would have thought this horrible form of epilepsy would have stemmed from one grand mal seizure on January 20th, just six short months ago.

The Doodle has been on a fast-track to Hell as the seizures increase and get worse every single day.

I'm not going to knock the medical intelligence of the few doctors and nurse practitioners I've dealt with at Stanford. They most certainly know their stuff. They are the best of the best. What bothers me is their terrible bedside manner. They have zero compassion and when they deliver what might seem like good news, they are quick to be matter of fact that it is not; so wipe that smile off your face.

Like ripping the carpet out from under you, they don't want you getting off the phone with even a trace of hope. Fine. But check your giant medical egos at the door and stop being offensive and self-important when talking to a distraught parent at their wits end.

I believe that because some of these Doctors don't know everything about epilepsy that when they feel cornered with questions they cannot answer, they are quick to be short with you instead of taking the high road and just saying, "I don't know".

Now that I have an appointment at UCSF and because we've already been seen at Stanford, even though they made it clear that they were not OUR DOCTOR...they aren't quick to part with critical test results and copies of the video eeg. I just called the Nurse Practitioner, again, to re-ask for the results and got a nasty message back that the odds that I would have the items in time for our appointment next week were slim because they were really busy there with all of the "really sick children". WTF? My child isn't sick? A severe form of untreatable epilepsy might categorize the Doodle into being "really sick" I would think. Are 60 seizures a day not enough to classify a little boy as "really sick"? So I called her back and left her a message explaining that I must have had a bad connection, because it seemed to me I heard her insinuate in my voicemail that my child wasn't sick enough to get any kind of expedited service and get copies of test results which we have paid greatly for. I reminded her that we still had not received the results of our Genetic Testing that was done back in May.

She phoned me back and assured me that our test results were sent out to us and our local neurologist on June 1st. I told her again that neither of us received the results. I asked her to fax it to me and she refused. She said she would put it in the mail today and "hopefully" I would have it by next Monday in time for our UCSF appointment.

We also had a conversation as to what my goal was by going to UCSF; which I thought was the oddest question ever. I told her obviously my goal was to get the seizures under control and see a Pediatric Neurologist for the Doodle's rare and untreatable form of epilepsy. That they have gotten 3 times worse since we were seen in May at Stanford. I told her I was hoping they could do a surgical procedure with their cutting edge technology and she quickly dismissed that idea--telling me that Doodle Bug is not a candidate based on his type and generalized location of the seizures. She even used the word "mentally retarded". Nice.

We talked further about the genetic testing for Fragile X, Angelmen's Syndrome, and Prodder Willy that were done and came back normal. Originally when I found out from her Doodle Bug did not have these, I was so very happy. Yay. This Stanford Nurse Practitioner was quick to squash my happiness by telling me..."Just because he doesn't have one of those, he probably still has some form of dna corruption and that they will just have to keep testing him for different things. If those come back normal, that also is not good news. It only means they don't have a genetic test yet for what he does have."

Please. Please. Please be nice considerate people at UCSF. I know they too will be very knowledgable, but I don't think I can take dealing with another Asshole with a superiority complex. I appreciate that these people know what they are doing but I would like to put on the Stanford feedback form that they need to take a course in human relations and get their empathy chip checked.

Oh the Irony

Today was the Big Day. The day we have been waiting for. The day when I might finally get some answers as to why Dominic is having seizures. We’ve waited over a month for this important, life changing appointment.

We were packed and well stocked with Very Vanilla Soy milk. The car was gassed up and I had even been to the Bank. Arrangements had been made for Jimmy to spend a couple of nights with a friend so that he could get to school. One laptop and $1000 later, I was ready to work remotely, all necessary preparations and precautions had been made to ensure smooth sailing.

We left extra early to allow for traffic during this wet, miserable day.

The Doodle began getting sick last night with a fever…a little gift Jimmy brought home from school last week. I can tell when Dom is feeling icky, because he gets even more unbelievably clingy. With one hand in my shirt for comfort, if I even think about getting up to pee, he cries. Not just any cry or sickly whimper, but by the time I have wiped he is in full-blown hysteria.

Being the smart, forward thinker I am, I called Stanford this morning and spoke to a woman in Admitting. I told her Dominic had a 100 degree fever and asked should we still come in for the appointment? The perky voice on the phone assured me, “Well, I don’t see why not…” And so we were off. 3 hours to get to Palo Alto, we made it just in time for our appointment. The Valet took the car and I loaded the Doodle into a familiar red Radio Flyer wagon, like the kind he loves so very much at home.

We made our way into the hospital and were immobilized by a very vigilant Security Guard who I will call "Lupe". Lupe and his associate Nurse began asking us a barrage of health related questions before they would allow us any further into the hospital. Now the Doodle was crying. Again. Lupe wanted to know if anyone in our family had been sick with a fever, cold, sore throat, stuffy nose, rash, vomiting, etc. I explained that Dominic had just began getting sick the night before and had a fever. At that moment, you could see the look of terror and excitement in Lupe’s eyes. This could be his big break he thought to himself. I could see his chest puff up a little bit when he insisted that the Doodle and I get a mask on immediately. He quickly phoned his Supervisor and started speaking in really fast Spanish.

The Nurse just stood there and stared at us with wild eyes. She told us to have a seat and not touch anything. For the first time in my life, I felt what it might feel like to have the Plague and not figuratively speaking. I thought the next call might just be to the Center for Disease Control and that we would be featured on KGO News later this evening.

One hour later, after Lupe and the Nurse quietly consulted with the highest of higher management, a woman came down to the lobby wearing a too small Ann Taylor suit and bad shoes, where we were sitting and told us to "Go Home". Dumbfounded, I had to ask her to please repeat herself, because I thought for a moment she was sending us home-- After we just drove 3 hours and after I had confirmed that we were still supposed to come in for our long-awaited appointment.

“Come on, I’m being Punked right”? I said.

Any minute, Ashton was going to peak around the corner with his camera crew and Lupe and the Nurse were in on it the whole time. What kidders.

“No”, she said flatly, “We can’t take any chances here, and don’t have a private
room to quarantine you in, so we have to ask you to leave”.

“Ummmm. Maybe I’m in the wrong place? I thought I was in a hospital,
you know, for sick people??? Did I accidently end up in a bank or the DMV or
something?” I snapped.

At that point, I was at a complete loss of words and for me that is a rare moment. Before the tears could well up in my eyes, I drug the wagon full of our crap out the lobby door and waited another eternity for the Valet Guy to bring me my germ infested car.

Now, I’m a smart person, I am aware of the whole Pandemic Swine Flu going around but shouldn’t they have at least tested us first before they sent us home? Is that really very responsible on the part of one of our country’s finest hospitals to turn away a sick child? A child they assumed might have the Swine Flue? WTF?

2 ½ hours and one poopy diaper later, we made it back home. Oh, the irony.